January 4, 2020 at 10:52 pm #99514bglassModerator
Please accept my condolences and prayers for the loss of your dear mother. I am sure she felt great comfort and peace having her family with her, as you recounted in your loving message. It was inspiring to read about her love of life and her travels enjoyed even as she was pursuing treatment.
Thank you also for taking the time to write your observations on what worked well for your mother. This information will be helpful to others starting their journey with this cancer.
Take care, regards, MaryJanuary 4, 2020 at 12:08 pm #99512michaelParticipant
Last Sunday, my Mother Anne Cecelski passed away just 2 days after her 68th birthday. After 6 years of fighting intrahepatic cholangiocarcinoma, she physically lost the battle. While we are in great pain and our lives will never be the same without her, we recognize that 6 years is a considerable amount of time to carry on with this ruthless disease. At least, according to the statistics available back when Mom was diagnosed. Relatively speaking, we are grateful for the time we had.
Over those 6 years, she endured 3 resections, 2 ablations, 6 months of chemo, multiple rounds of radiation, 2 SBRT treatments, a radioembolization, 2 different clinical trials, and of course more trips to the ER than I can remember.
That being said, its really important for me to point out with great pride and joy that in that time she has also taken 3 trips to Norway (where she was born), a trip to Hawaii, several trips to Austin to visit my brother, dozens of weekend getaways generally at b&b’s, countless dinners or lunches with friends, and attended nearly every family gathering during that time. In short, she still lived her life. My Mother and Father’s retirement, which began just 2 months after her first surgery, certainly did not unfold the way they’d envisioned, but they certainly made the most of the good days they had together.
She left us very peacefully. In the bed she shared with my Father for nearly 44 years. In the house she called home for over 40 years. Holding the hand of the love of her life and her hero throughout this battle, my Father. Surrounded by her two loving sons and her two adoring younger siblings. All five of us, offering words of love and assurance, that it was ok. That she could just rest. Outside the bedroom, was a house full of family and friends ready to comfort her loving family and pay their respects. For as difficult as this battle had become and of course how very painful it was to watch her leave us, I could not have imagined a more beautiful way for her to close her eyes and be at peace.
Some advice for the newly diagnosed…
DO NOT fall into the trap of believing, that “the bigger the hospital the better the treatment.” This is a farce! Don’t get me wrong, you can get good treatment at the big hospitals, but most local oncologists or surgeons at smaller hospitals have studied at the big name places and/or done fellowships there. The locals guys/gals all stay up to date with current treatments/methods, they all attend conferences and read thoroughly. They would not last long in this field if they did not. Big hospitals are also often more difficult to deal with financially and logistically. In many ways, it just seems like they care more at the smaller hospitals/offices and take more time to know you and how you’re handling things. This is just a personal opinion derived from my experience with my wife fighting inflammatory breast cancer and of course Mom dealing with this.
Here are a few professionals I would like to HIGHLY recommend if it can help anyone in…
Dr. Carp, Surgeon; Lankenau, PA. : He’s not cold, but he does have the bedside manner of many surgeons (if you know what I mean). Regardless, you can tell he genuinely cares. He is confident without being arrogant and an extremely experienced and competent surgeon. He saved my Mom’s life twice and even fixed the fall out from the surgery she had down at Johns Hopkins with Dr. Weiss, who I would NOT recommend… watch out for Dr. Weiss.
Dr. Zeger, Oncologist; Lankenau, PA. : Extremely competent and warm. My Mom absolutely adored him! She never left his office not feeling better about her decisions. He helped us make ALL the right decisions for nearly 5 years. Very patient and makes things easy to understand. Saw us through treatment up until clinical trials began and Mom wanted to be closer to home.
Dr. Katz, Oncologist; Bricktown, NJ : Not as warm as Zeger, but again, she certainly cares… a lot! She’s tough as nails and someone you want in your corner. She tells the clinical trial people or the nurses/doctors at the hospitals how it is. She listens and really gets to know you, but is very honest and straightforward as well. Toward the end, she was the right doctor to have.
Hospice New Jersey : Of course I hope you never reach this point, but if you must we can not speak highly enough about these wonderful people. ALL the people involved. Very, very responsive, competent, and compassionate.
Of course there have been many others throughout this fight, but these are the ones I wanted to point out as exceptional!
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