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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,
JimThe 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,
JimLainy, although I’ve long added everyone on this board to my prayer list, please know you’ll have an extra one for a few weeks here.
Take care,
JimHello 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,
JimWe laugh. We cry. We hope and pray. We listen to our doctors and we challenge them to find a better way. We face whatever comes because we know we have to.
Mary was diagnosed in January and it’s been a fight ever since. I’m sure we’ll do the same this year, as will you.
I am learning to lean on friends and family even more, hoping they can build a relationship with Mary before she goes. I’m also finding time for silence to listen where we’re supposed to go and do. Only God knows. It is a great comfort to know we’re not alone.
I hope this helps.
JimThank you Catherine, Darla and Julie T! As I’m sure you all have, I’ve been pretty much a book worm on this subject since Feb 1 this year. If there’s anything I can help with, please let me know.
One last thought — I’ve been using CaringBridge.org to keep family and friends updated on Mary’s status. I’ve found that not only are they informed, it REALLY helps me organize my thoughts and feelings around what we’re going through. I know those who are praying for her do appreciate the updates. I’ve also found it helps to sometimes read back through the posts to see really how far we’ve come in a short time.
Again, Merry Christmas / Happy Holidays!
JimThank you both for your feedback and advice. Biliary Card will be included with the rest of our medical “records” that’ll go along for the trip and, lord willing, will say in my unopened briefcase the whole trip!
Marion I’ve tried to follow your link but for some reason it didn’t bring up a message. I’ll keep trying!
Regarding Molecular testing — she had it completed at Memorial Sloan Kettering earlier this year. They use their own testing protocol called IMPACT which is designed to quickly screen for the top 350-ish known gene mutations (see: https://www.mskcc.org/blog/new-tumor-sequencing-test-will-bring-personalized-treatment-options-more-patients for more info) and they found one — mTOR — which is a common mutation in Renal cancer. There was nothing specifically related to Cholangio, at least that would move her away from 1) the trial she was in at the time and 2) the standard of care.
We are in discussions with her local oncologist about repeating the testing after the first of the year, this time through Foundation Medicine, since the previous biopsy sample is almost a year old and all things change over time. We’ve been blessed to have a team of doctors who are all willing to collaborate for Mary’s benefit and the plan is to regroup the “team” and determine what is the best way to move forward.
For now. we deal with the tube and the side effects from FOLFOX while we keep this beast at bay! Oh, and we also look forward to a few days in the warmth of the Florida Sun!
Appreciate your help!
Jim
