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Marion,,,Do you think this could be a topic in itself? Maybe it is and I have missed it. I came across a posting, or several really, yesterday that spoke of the fear and I know a good friend of mine, now 3 years post whipple for pancreatic cancer..and I discuss this fear a lot..she is very active, still working and “into” many things. Mine came right after retirement when I still didn’t have my retirement plan going and I’ve had a hard time implementing anything “Well…..IF my next scan is clear..I can do..such and such.” Some spoke of counseling with counselors trained specifically in this issue….Others seem full of travel plans, family plans, etc.
It would be very interesting to hear what others do…although what you say, I know is true….plan for the future (and I’ll add…live in the present)…
When I wondered how my scan would turn out, I reflected that it would be too bad if it came back positive that I had lived the past 2+ years letting the shadow take over…
Dear Patti,
I, too, want to support others gratitude for the life your brother has lived and for your sharing his journey with us. And, in the midst of your sorrow, the support and care you are showing toward others.
Thank you…..Hugs, KathyJust got my Ca-19-9 figures…13.5, the lowest they have been at Johns Hopkins. Remembering that I was in a panic last summer when they were at 40, and Marian telling me it was really too early to panic, I want to support that by letting people know that the CA-19-9 rise and fall can be for other reasons.
I have read other posts about the emotional toll and if there are postings from others about how they have learned to live with cancer, I would so appreciate their sharing their experiences.
Thank you again to all who offer such support and knowledge and hope on this discussion board. I am so grateful as I know everyone else is….
Thank you all for the well wishes. I hope with more time I become calmer and centered…living with the cancer threat takes some real focus to master! Working on it, though. I appreciate this board so much.
Sue, This is wonderful news! Congratulations. It is stories like yours that keep us going. So glad you shared. Keep enjoying LIFE!
Think of MD Anderson Hospital in Texas for a 2nd opinion..or St. Louis. Those are the ones (and Dr. Kato) that I’ve read about with fantastic results. Since I know Dr. Choti as my own surgeon, he tends to be a bit conservative. He feels that one needs to seek the best quality of life, at least that’s what I’ve gained from him. and not spend the last days living miserably with chemo’s side effects. Surgery is the only option for a cure. He has told us many times, that chemo is not a cure, but can hold the cancer at bay for awhile. I hope you get a second opinion. I’ve read of very successful treatments here on this website that otherwise might be considered not possible somewhere else.
(I still cry and it’s been over 2 years…I’ve had a terrible rash since I had a hernia repair last week and they felt it was getting systemic and they feared that it could get into the mesh of the hernia repair. The itching became unbearable and I finally went to the ER where I got prednisone intravenously. Today the dermatologist I went to told me it was on the surface, not inside. I surprised even myself by crying ((and that was at good news). The strain and fear and the great unknown take a toll, but there is a bright side and life is good even under these circumstances. Keep coming to this discussion board as the best, most loving people are here and you will get tremendous support. Good luck and keep us posted if you get second opinion.Malc..I share in your joy of what life has held since the fateful words. Nothing ever was or has been as heart wrenching, but the sum total of all the things that have happened since has been amazing. Keeping tallying of all the joys has become much easier! Thanks for sharing your good news
KathyOh Lainy. You know I should post my beautiful Irish/welsh/American grand children’s pictures and you will see why I’m so crazily enamored. But I know everyone with grandchildren feels the same way . I wore my little red ceramic heart pin on my hospital gown that my 5 year old grandson Oliver made for me. And I was surrounded by the care of the nurses on the mainly pancreatic cancer surgical ward. Where are so many angels found all at one time in one place? I can hardly contain myself from packing. Have to have a few tubes out first
It was wonderful seeing your video and your efforts to raise funds for the purple ribbon wearers in addition to pink! My doctor said that all the intestinal cancers outnumber Breast cancer but intestinal ones are compartmentalised do that we have pancreatic and bile duct and esophageal so that there isn’t a strong number yet for research that would directly deal with our small numbers. I keep hoping to find out a direct place funds will go for research. Where will money make an impact? The Akron fund doesn’t do the direct research. Who do they link with for this? Hoping to find out! Maybe Marian or someone else knows where money can help directly with research. Thanks!
Did you go to to Dr. Choti at Johns Hopkins? He’s my doctor and the best. If you haven’t seen him, perhaps you could make an appointment with him. I saw a different doctor first at JH, but Dr. Choti was a better fit for me and so far, it has been the right choice. I’d be happy to talk with you more. Let me know.
Hernia repair done! 3 nights rather than 1. Sometimes anesthesia can be a challenge to the older ! I’m glad to see that 80 was mentioned as “elderly ” on one if the other threads so now I can feel young
I only noticed the slower comeback from the anesthetic this time. Onward for all of us. We have good years ahead.
