A silver lining?

NikiMo
NikiMo Member Posts: 342
in Esophageal Cancer #1
Thanks everyone for responding and giving me support over the past week. This has been by far one of the scariest moments in this cancer trek, only the surgery would top this week. It has been confirmed that Jeff was septic when we arrived at the major hospital, he is lucky to have responded so well to antibiotics and fluids. At this point they have figured out the bug ( a very common pathogen for folks who spend time being hospitalized...or people with lines) and which antibiotics to use, they have moved him from IV antibiotics to oral. He has not had a fever or BP issues since Saturday evening. They are doing 24 hours of observation to make sure he doesn't spike a fever on the oral antibiotics. If he is still doing well by tomorrow evening, they will let him go home to complete 2 weeks of oral antibiotics.

Now for the twist. It has been deemed that the risk now outweighs the benefits of continuing on post op chemo. Jeff had completed only 3 of the 8 rounds, but his immune system is not strong enough to carry. You may remember that Jeff had a complete pathological response, meaning the tumor was gone and the lymph nodes removed were all clear. The post-op chemo was 'insurance'. As the oncologist put it today...'you don't buy so much insurance that you break the bank'..a bit gets lost in translation with his English but I got what he meant.

They decided the best thing to do for Jeff was to remove his port as they feared it was the source of the infection, and even if it wasn't that bugs likes to cling to foreign bodies. So they came in at 1 today and broke the news. "We are taking out the port and you are done chemo." Jeff looked really worried, but I got the oncologist to explain that there is no PROVEN benefit of post-op chemo for those patients with a complete response. That he already had a pretty high dose of chemo, and that he thought he had a reasonable course of therapy. I am torn at this point, of course I wanted to see Jeff complete the total therapy, but I do not want to lose him to the chemo after he kicked cancers butt!

So for now I have told Jeff that I think this is the universes plan. He is christian so I said this was gods plan, that he knows you have had as much as you can take. Now you have to heal, move forward, and live each day you are given to the most! He seemed calmed by that idea. I am not sure what life is like without constantly thinking about chemo and cancer, but I welcome the chance to live it.

With much love for each and every one of you strong, brave, giving, caring friends,

Niki

Comments

  • Ericalynn
    Ericalynn Member Posts: 200
    #2
    Time to Heal!
    Niki,
    I’m happy that you were able to calm Jeff’s fears regarding being done with Chemo before the completion of the entire prescribed dose. You did a great job of explaining the benefits vs. risk issue. I was worried when the surgeon and both oncologists told John he did not need post –op chemo. I specifically asked about the “insurance” chemo and all involved said that there was NO evidence that it decreased reoccurrence in patients that had complete pathological response.
    It is natural to be worried you and Jeff have been through so much.
    Jeff can start healing regaining strength and living life to the fullest.
    Holidays, Football, Concerts, riding around in the “new” Saab (We are still waiting for pictures, lol)!
    One Day at a Time!
    Keep us posted on how Jeff is doing and discharge date.
    I’m out here cheering you both on!
    Love & Hugs
    Erica
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    Sometimes we just have to leave it in God's hands
    Niki,

    It is great to hear that Jeff is doing better. I am sure at this point he is torn between being happy there is no more chemo and worried that he did not get a chance to do everything possible to insure there is no chance of recurrence. I think at times like this we just have to trust that God is taking us in a direction for a reason.

    I think the fact that he had a clear path report post surgery really minimizes the risk. Most people with a clear path do not get further chemotherapy.

    I will be praying that Jeff feels better soon and is home to enjoy the holiday.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • NikiMo
    NikiMo Member Posts: 342
    #4
    Ericalynn said:

    Time to Heal!
    Niki,
    I’m happy that you were able to calm Jeff’s fears regarding being done with Chemo before the completion of the entire prescribed dose. You did a great job of explaining the benefits vs. risk issue. I was worried when the surgeon and both oncologists told John he did not need post –op chemo. I specifically asked about the “insurance” chemo and all involved said that there was NO evidence that it decreased reoccurrence in patients that had complete pathological response.
    It is natural to be worried you and Jeff have been through so much.
    Jeff can start healing regaining strength and living life to the fullest.
    Holidays, Football, Concerts, riding around in the “new” Saab (We are still waiting for pictures, lol)!
    One Day at a Time!
    Keep us posted on how Jeff is doing and discharge date.
    I’m out here cheering you both on!
    Love & Hugs
    Erica

    Umbrella drinks in March??
    Hi Erica,

    The more I think about Jeff stopping the chemo the better I feel about it. It is time to get on with life, get back to the new normal. I really look forward to going back to being the loving wife and put my nurses hat on the shelf, hopefully never to see it again!

    We have decided for our first vacation that we want to stay in the states, baby steps. As you know St. Pete is our very FAVORITE beach in all of Florida. I am thinking February or March. Still up for those drinks? :)

    PS. Congrats on the promotion!! That is awesome news. The funny thing is that my work has approached me about applying for an open promotion. I was afraid they thought I wasn't working hard enough...

    Send our best to John!

    Niki
  • NikiMo
    NikiMo Member Posts: 342
    #5
    paul61 said:

    Sometimes we just have to leave it in God's hands
    Niki,

    It is great to hear that Jeff is doing better. I am sure at this point he is torn between being happy there is no more chemo and worried that he did not get a chance to do everything possible to insure there is no chance of recurrence. I think at times like this we just have to trust that God is taking us in a direction for a reason.

    I think the fact that he had a clear path report post surgery really minimizes the risk. Most people with a clear path do not get further chemotherapy.

    I will be praying that Jeff feels better soon and is home to enjoy the holiday.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    My thoughts exactly
    Hi Paul,

    Thanks for the prayers over the past days, much appreciated! I think you are absolutely correct, it is time to put our boxing gloves away and start to enjoy life again. I think that all things happen for a reason, and maybe this was gods way of letting us know that we could take a breath.

    I hope that you enjoy the holidays too!

    Niki
  • Ericalynn
    Ericalynn Member Posts: 200
    #6
    NikiMo said:

    Umbrella drinks in March??
    Hi Erica,

    The more I think about Jeff stopping the chemo the better I feel about it. It is time to get on with life, get back to the new normal. I really look forward to going back to being the loving wife and put my nurses hat on the shelf, hopefully never to see it again!

    We have decided for our first vacation that we want to stay in the states, baby steps. As you know St. Pete is our very FAVORITE beach in all of Florida. I am thinking February or March. Still up for those drinks? :)

    PS. Congrats on the promotion!! That is awesome news. The funny thing is that my work has approached me about applying for an open promotion. I was afraid they thought I wasn't working hard enough...

    Send our best to John!

    Niki

    I'll Buy the First Round!
    Niki,
    Glad you are feeling better about Jeff stopping Chemo, I don't know about you but I have to process information and it sounds like you have processed and are moving on! I agree put nurses hat on shelf.
    I'm so excited that you are going to come to St. Pete Beach! Is there a certain place you stay?
    There are lots of places where we can sit looking at the Gulf of Mexico sipping an Umbrella drink. Keep me posted if you set a date.
    Thanks for the Congrats, new chapter in my career.
    Are you considering applying for promotion? I LOL at your comment "they thought I wasn't working hard enough" they do not offer a promotion to a slackers!
    Well it sounds like we have an Umbrella Drink plan.
    I’ll have something to look forward to!
    Give my best to Jeff
    Oh and the new normal is pretty much like the previous normal (just more frequent meals)
    Love to you both
    Erica
  • Cora11
    Cora11 Member Posts: 173
    #7
    NikiMo said:

    My thoughts exactly
    Hi Paul,

    Thanks for the prayers over the past days, much appreciated! I think you are absolutely correct, it is time to put our boxing gloves away and start to enjoy life again. I think that all things happen for a reason, and maybe this was gods way of letting us know that we could take a breath.

    I hope that you enjoy the holidays too!

    Niki

    Nikki and Jeff,
    What a scary
    Nikki and Jeff,
    What a scary episode, and I understand those fears completely about the chemo. What an ordeal this has been for Jeff and I am just so very grateful that Jeff is on his way to healing after sepsis. I hope you and Erica and John and Jeff enjoy those Umbrella drinks, and just take a little sip for me while we freeze in the frozen Midwest. I am learning this as well, that whatever our belief system might be, ( God, Universe..) life is sometimes just so beyond our control or what we have "planned". Easier said than done as I worry right now about every little post-op potential problem. ( that is when being a medical person is not a good thing.) You both deserve some respite now and better days are ahead. And, congratulations on the offer of a promotion. What an accomplishment during this stressful time. I wish you comfort, healing and peace during the holidays. Cora
  • TerryV
    TerryV Member Posts: 887
    #8
    duplicate
    silly forum
  • TerryV
    TerryV Member Posts: 887
    #9
    Duplicate
    silly forum....
  • GerryS
    GerryS Member Posts: 227 Member
    #10
    Same thing..........
    Nikki, Tell Jeff I know exactly how he feels. I too, suspended my chemo after 2 of the planned 3 rounds. I was so weak and they did not want to compromise the kidney function anymore. It was scary but also a relief as recovery could continue. My prayers are with you. I am nearing my 2 year since diagnosis in Feb. Very Grateful.

    Gerry
  • TerryV
    TerryV Member Posts: 887
    #11
    You truly have it all together, Niki!
    You must be an amazing person to do what you do for Jeff and still go above & beyond at work! Either that or your boss actually "gets" what a treasure he has in you!

    I'm so sorry that Jeff isn't able to complete the full treatment, but I agree - this must be what's "in his cards". Things do happen for a reason and I'm glad that you are both "tuned in" enough to get it.

    You both enjoy life - now's your chance to get back out there. I can't wait to hear your schedule once Jeff is feeling a bit better. I'm sure it will be full.

    I'm envious of the Umbrella drink event. Highly unlikely that I can get Nick on a plane - yet. :) We've got a birthday party to attend in Atlanta in February though. I'll keep trying.

    Please welcome Jeff back to life for us! We're finding that the words hospital or cancer don't have to be in everyday conversation. and Boy! is that ever nice :)

    Love & Hugs,

    Terry
  • Ericalynn
    Ericalynn Member Posts: 200
    #12
    TerryV said:

    You truly have it all together, Niki!
    You must be an amazing person to do what you do for Jeff and still go above & beyond at work! Either that or your boss actually "gets" what a treasure he has in you!

    I'm so sorry that Jeff isn't able to complete the full treatment, but I agree - this must be what's "in his cards". Things do happen for a reason and I'm glad that you are both "tuned in" enough to get it.

    You both enjoy life - now's your chance to get back out there. I can't wait to hear your schedule once Jeff is feeling a bit better. I'm sure it will be full.

    I'm envious of the Umbrella drink event. Highly unlikely that I can get Nick on a plane - yet. :) We've got a birthday party to attend in Atlanta in February though. I'll keep trying.

    Please welcome Jeff back to life for us! We're finding that the words hospital or cancer don't have to be in everyday conversation. and Boy! is that ever nice :)

    Love & Hugs,

    Terry

    Umbrella Drinks
    Terry,
    If you cannot get Nick on a plane then we will do a conference call from the beach bar, LOL!
    Our class has to have a celebration drink TOGETHER!
    LOVE TO YOU ALL
    Erica
  • sandy1943
    sandy1943 Member Posts: 824
    #13
    Niki, As I have posted
    Niki, As I have posted before, My pathology report after surgery, May 2008, indicated I still had an active lymph node. I started post op chemo and two weeks into the first round I got a blood clot in the jugular vein. The doctor said we couln't continue with chemo, because it was destroying me, so we stopped and removed the port. I was concerned but did as my doctor said and just trusted God. That was 2 1/2 years ago and I am still cancer free. Even though the test indicated I still had active lymph nodes, my next ct showed I was ned.

    Like Jeff I know that God brought me to where I am today and He holds my future in His Hands.

    Sandra
  • JaneO
    JaneO Member Posts: 40
    #14
    Hi Niki, I am Jane...I just
    Hi Niki, I am Jane...I just happened to join this group the other day and your story was the first one I read. I was impressed by the support you received as you told your story. It sounds like you did an amazing job bringing Jeff to the hospital in time. My bf was diagnosed in July, just after his 51st birthday. I worry everyday what the future will bring. I appreciate all the support and input everyone here gives and know that going forward I will be able to find people that "get it". I recently lost my father in February. He was 81 and not in good health. I was his primary caregiver for 13 years in my home. It was a shock when Jack was diagnosed at Stage 4 (I am discovering now). I can't help but wonder what to expect going forward. Thank you for sharing your story, I realize I have soooooo much to learn! I am praying for you and Jeff. I know how hard it is to be a caregiver. Sounds like your instincts kicked in. You are awesome! Jane
  • NikiMo
    NikiMo Member Posts: 342
    #15
    JaneO said:

    Hi Niki, I am Jane...I just
    Hi Niki, I am Jane...I just happened to join this group the other day and your story was the first one I read. I was impressed by the support you received as you told your story. It sounds like you did an amazing job bringing Jeff to the hospital in time. My bf was diagnosed in July, just after his 51st birthday. I worry everyday what the future will bring. I appreciate all the support and input everyone here gives and know that going forward I will be able to find people that "get it". I recently lost my father in February. He was 81 and not in good health. I was his primary caregiver for 13 years in my home. It was a shock when Jack was diagnosed at Stage 4 (I am discovering now). I can't help but wonder what to expect going forward. Thank you for sharing your story, I realize I have soooooo much to learn! I am praying for you and Jeff. I know how hard it is to be a caregiver. Sounds like your instincts kicked in. You are awesome! Jane

    Hi
    Hi Jane,

    I hate to have to welcome you to a cancer support group, but it is a very supportive and caring place to be when faced with EC. I am sorry to hear about your boyfriends diagnosis. EC comes as a complete shock to most, I know it did to us. I am also sorry that my scary story was the first one you followed!! Believe me we have had it fairly ok throughout the course of treatment, the surgery was tough and of course last week was very sobering, but the first round of chemo and rads wasn't too terrible. But, you are right I received amazing support from my friends here. Please share more with the group, you will find kindered spirits here, no reason to walk this journey alone.

    So sorry for your dads passing, sounds like you are one amazing caregiver as well. Not really a choice when it comes to caregiving, we are awesome because we love the patient. I prefer to think of myself as a wife and not a caregiver, I am sure you feel the same way about your boyfriend and your dad. Glad to have you on board, even though I wish you didn't have to be here.

    Niki

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