It’s a long story — I have an ask…

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Viewing 15 posts - 1 through 15 (of 27 total)
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  • #90827
    marions
    Moderator

    My most sincere condolences on the passing of dear Mary. She will be forever on this site and in our hearts.
    Love and hugs,
    Marion

    #90826
    middlesister1
    Moderator

    Dear Jim,

    I am very sorry to read your post and hear of your loss.I am thankful to know that you are surrounded by many who loved Mary and will be there to support you.

    My deepest sympathies are with you. Take care of yourself,
    Catherine

    #90825
    lainy
    Participant

    Dear Jim, I am so very sorry to read about your loving, Mary. Grief is a very private trial and we each go through it differently. There are no tried and true ways and you just do what is comfortable with you. One day you will turn a corner and the grief slowly turns in to all the greatest memories. Please accept my mist humble condolences and remember that life is for the living as I am sure Mary would want it that way.

    Death is nothing at all. It does not count.
    I have only slipped away into the next room. Nothing has happened.
    Everything remains exactly as it was. I am I, and you are you,
    and the old life that we lived so fondly together is untouched, unchanged.
    Whatever we were to each other, we are still.
    Call me by the old familiar name. Speak of me in the easy way which you always used.
    Laugh as we always laughed at the little jokes that we enjoyed together.
    Play, smile, think of me, pray for me.
    Let my name be ever the household word that it always was.
    Let it be spoken without an effort, without the ghost of a shadow upon it.
    Life means all that it ever meant. It is the same as it ever was.
    Why should I be out of mind because I am out of sight?
    I am but waiting for you, for an interval, somewhere very near, just round the corner.
    All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again!
    By Henry Scott Holland

    #90824
    shelliec
    Member

    Hi, I am so sorry to hear about your wife I am in a very similar situation with my fiance. He was diagnosed last July also had gotten a blood infection from the tubes. We finally got through that, and he started at U of M for chemo which he did 6 months with no shrinkage it’s over 40% of his liver. He deicided to take a break and has been off for 16 weeks. Our oncologists suggested directive therapy where it targets just the liver and kills the cancer cells. I hope you and your family all the best hang in there! You got this!

    #90823
    darla
    Participant

    Dear Jim,

    You and your family have my deepest sympathy. Know that you are in my thoughts and prayers at this very sad & trying time.

    Take care and just try to take things one day at a time.

    Hugs,
    Darla

    #90822
    mkc228
    Participant

    Where to start.

    Mary passed away on May 17 after about 15 months of the most valiant fight I have ever seen. Through it all, and especially at the end, she never lost her grace and will to live, even though she had given it all over to God. She was at peace.

    Her funeral was a testament to her life — about 600+ at her visitation, a wonderful rosary attended by hundreds, followed by an energetic group dance to “Dancing Queen”, her favorite and a promise I made to her years ago. For her funeral they closed the High School and most were in attendance where the school Chaplin delivered one of the best homilies I’ve ever heard.

    Now we pick up the pieces, one at a time, as best we can. She is missed by our three kids and I, her father and family, and on my side. We have a wonderful support group around us, however sometimes I think we just have to go through the grieving process and, sometimes, fall down in order to get back up. I know she wants us to keep going!

    Mary’s story will continue to live and, hopefully, help others with this disease. She participated in two clinical trials knowing full well they probably wouldn’t save her but may save others. I captured most of our journey on Caring Bridge (www.caringbridge.com, sign up and search for Mary Carr) and am working internally on telling her story in a more formal way. It’s what we need to do to help us make sense of what’s happening and maintain some sense of control in an uncontrollable situation. Every little bit helps.

    Lastly I have no idea what we would have done without God in our lives. Frankly I have no idea how people without faith manage to make it through these passages. “Thy will be done”, giving it over to God, having an advocate who can intercede for us in Heaven, and the belief we will see each other again keep us going and will for the rest of our days.

    I will keep you all in our prayers as you continue to fight, to help others with theirs. Please take care. I’ll try to check back on the various message boards however right now it’s pretty crazy as we figure out things. We are very grateful to have you all there!

    Take care,
    Jim

    #90821
    marions
    Moderator

    Jim……Mary and you consistently adapt to the ever changing landscape of this cancer and move forward in the most admirable way. In this most precious time, adding additional help will be of great benefit to you both. Appears that pain is controlled and I wish for the breathlessness to ease off as well. I am wondering; would Mary benefit from additional oxygen?
    In regards Afinitor, I wish for Mary to have a great response. Some have had great luck with targeted drugs and the same may come true for Mary. My fingers are crossed.
    Hugs,
    Marion

    #90820
    lainy
    Participant

    Jim, I am so very sorry to read about Mary but know that your wonderful attitude is what is getting you both through this journey. Giving in, not up is perfect and will allow you to enjoy what ever time is to be given. When my Teddy went in to Home hospice he told everyone we were on our Honeymoon! You will never look back at would haves, could haves you are doing it all with grace and dignity! Wishing for Mary to be comfortable and keep on making good memories as those are the ones you will remember in time. We are here for you and please keep us posted on Mary’s progress.

    #90819
    darla
    Participant

    Jim,

    Thanks for updating us. Glad to hear that you have help and support and that Mary’s pain is being managed. I think you are dealing with things as best you can under the circumstances. I know what it feels like to just want to fix things and know that you no longer are in control. It’s hard, but you seem to have a good attitude through all of this. We can still be cautiously optimistic about Mary’s latest treatment option. Know that I am thinking of you and Mary and hoping for the best. Please let us know how things are going. We care and are here for you.

    Hugs,
    Darla

    #90818
    mkc228
    Participant

    The latest…

    It has been a very long 4 months and Florida seems years ago. We have run through all our options for approved chemo treatments and have moved into the experimental space. Mary was in a trial at the University of Michigan for patients testing positive for the RNF43 mutation exhibiting a specific pathway. She made it a week before a left facial paralysis incident (temporary, lasted 10 minutes) pushed a brain scan and identification of swelling of the meninges took her out of the Phase 1 study. She is now currently on Afinitor (for her mTOR mutation, also discovered in the genetic work) and we pray this last option works.

    Her weight has been in steady decline while the disease has progressed, and the more the tumors grow, the more pain meds have become a part of our lives. She has developed fluid on her lungs from the metastatic nature of the progression. A PleurX has taken the place of weekly thoracentesis’, and more at home care, however breathing remains labored. Tomorrow we have a home nurse coming for an assessment, which we hope gives us some relief from the “techincal” caregiver responsibilities and allow us to enjoy what time we have left. Also allow me to continue work for a while longer.

    It may sound like I’m complaining. Actually I’m not. I’m at peace with where we are. We are still hopeful that the Afinitor will work a miracle and, until we say it won’t, this is our story! It is very hard to watch your best friend hurt and NOT be able to make it all better, especially when you’re hard wired to FIX THINGS! I continue to work on this aspect of myself through this all.

    One thing I have learned is how to pick up the phone and talk with anyone, about anything, and to question and probe their insights to see if it applies to what I see with Mary. We have found so many people who WANT to help us, and will do anything we ask. And believe me, I have asked! I have her primary and her oncologist’s cell phones on speed dial and we probably talk 4 – 5 times per week. They are the angels in this whole journey.

    Where and when will it end is not our call. Only He knows for sure. We have truly learned to give-in, not give-up, and the true meaning of “…thy will be done…” We have learned that God is not a genie, we can’t get three wishes, and our prayers have turned to, “help us understand”. It’s still hard.

    So it’s off to bed, anxious to see what tomorrow brings and thankful for the opportunity to live it. I wish you all the best, will keep you in our prayers, and will keep you posted on where we go.

    Take care all,
    Jim

    #90817
    darla
    Participant

    Jim,

    So glad all went well and you had a great get away and are now back and ready to move forward with a plan in mind. Wishing you the best as things move forward. Take care and update us as you can.

    Hugs,
    Darla

    #90816
    lainy
    Participant

    Dear Jim, I applaud you both. Just like a couple of teenagers you took off with some skepticism and a lot of courage and had your wonderful break where you warmed up and it was good. I love the think, talk and plan method as that is how Teddy and I handled it and when you can be open and talk it out it is beneficial and cathartic to you both. With a plan in place all the fright will turn top fight. I think you might have to get Mary a pair of pink boxing gloves! Wishing you both the best and love your updates!

    #90815
    middlesister1
    Moderator

    Jim, even without this lousy disease, being able to travel (especially to a warm place) and spend time with family is what life’s about. We are booked with parents to ft myers in May . I was so hoping your trip would be perfect. I’m so very happy to hear you came back recharged. And, your offer of assistance to others shows that Mary has a husband who will give her all the support she needs.

    This board introduces us to some amazing people who in difficult times still shine. Thank you.

    Thoughts and prayers are with you,
    Catherine

    #90814
    mkc228
    Participant

    Hello all. It was a good trip to Florida with no issues. Now we’re back in Michigan winter, back in chemo, and back at the fight!

    Mary’s bilirubin jumped up to 5.0 on the day we left, but after a quick tube check, we decided to go anyway. It went to 5.6 while we were there (thanks Quest Diagnositcs of SW Florida) but after a quick consult with her Doc, we decided to stay through the 2nd — not to cut in short.

    Yesterday she had a blood draw and everything is moving in a good direction — bili is 3.4 and (hopefully) dropping. She’s in her chemo fog now, so thought a good time to update.

    Being away gave us time to think, talk and plan. We came into today’s oncologists appointment with a list of questions about both her liver function and the cancer, and had a great meeting. And we have a plan, which — for us at least — keeps us moving forward.

    My best to all who have read, commented and offered great advice. Will keep you all in my prayers. AND, please let me know if I can help in any way.

    Regards,
    Jim

    #90813
    mkc228 wrote:
    Good afternoon all. I’ve been watching from afar for the past 9 months but now have a few questions I hope you can help with.

    My wife was diagnosed with Intrahepatic CC in early Feb after a few months of increasing indigestion and belly pain. Like most I’ve read, stage 4, inoperable, incurable but treatable. She was in a trail at the University of Michigan (Gemzar and Abraxane) moving along fairly well (shrinkage) until an increasing bilirubin pointed to the need for her drain tube. “That D*mn Tube”, as I like to call it. Since August it’s been changed about 6 times leading to 3 blood infections and hospital stays. Each time she drops another 5 – 7 pounds which she can’t afford to lose!

    She is now on FOLFOX as her CA19-9 was on the rise. Even though the scans show stable she was taken off the trial due to the rising numbers and issue with the tube. Still have an option to go back to Gemzar and Cisplatin should her oncologist wish. We are also looking at / for other trials to keep this thing under control.

    So now you know our story — in a nutshell: keep it under control until some of the new treatment options come around for this very rare disease.

    Next week we leave Michigan for 12 days in Florida. Our kids will meet us there and are intent on a nice time looking at palm trees with Christmas lights enjoying some (hopeful) relaxation for the Christmas Holiday! We had a tube exchange today in preparation (just in case) and she’ll have a “minor dose” of FOLFOX before we go to “hold her over”. (no pump!).

    Here’s my ask: Does anyone have recommendations for Interventional Radiologists or Oncologists in the Naples / Ft. Myers area who we can have ready in case we need to see someone on short notice? If no specifics, how is the best way to scope out the area so we’re prepared if one of the middle of the night fever / pain fits hit and we need to see someone quickly.

    All her meds are packed, I have our binder with doctors reports, CD’s of scans, history of blood work, etc. that will go along with us just in case. I just want to feel comfortable that we will know who to call first should one of these things happen.

    Thanks in advance for any advice this forum can provide!
    Jim

    Hey Jim,

    I tried sending a forum email, but I’m not sure it went through. After reading your story, there are so many things that are similar to our situation. My husband (Phil) also has the same type of tumor that is inoperable and in stage 4 ( metastasized to lungs). He is on the Gemzar and Oxyplatin. He will have his stint ( that drains his bile duct to keep him from being jaundiced) replaced next week.
    What is FOLFOX?

    How did she make it on the trip? Phil has very little energy most of the time and sleeps the majority of the day. He has maybe 2 good days out of every chemo cycle ( every other week).

    I have been searching this forum for someone in our similar situation (spouse/type of tumor/ etc) . If you don’t mind, you can email me your response or put it on here. ( email is easier to have a ‘conversation’ to me) shdavis308@gmail.com

    Anyway, my best regards to you both. Phil’s diagnosis was made in October ( even though I’d seen symptoms months before). Doctors gave him a year with chemo. Just trying to get insight .

    Thank you,
    Sharon Davis

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