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Such great news! Congrats!
How do you know if you’ve survived? Scott’s been “cured” but there’s always going to be this little nagging fear that it’s lurking. With transplant, the immunosuppression is an invitation for the cc to explode if there’s anything left, but they are saying his old liver was cancer free; that the radiation fried it. Is cured and survived the same thing?
One can only hope, and move on in the day we are given; do our best, and let God do the rest.
Oh! When my neighbor said, “Well, doesn’t he want to feel better?” after I explained that Scott would not be interested in taking her supplements; and a lady at church offered him the help of her blind herbalist, “who is really, really yellow, but I’m sure he could help save his liver,” and there’s this diet blah, blah, blah, “he had stage 4 cancer and he’s still with us……… ” until you could just scream.
But, I think about how many stupid things I have said just not knowing; not experienced; not realizing how painful it would be to the other person. There’s been times that it would not matter what anyone said; I’d still be annoyed. I wonder if it’s just part of the cancer package.
But while we’re ranting, I’d like to make a clean purge of the fact that I’m tired of statements like, “…… and then I thought, at least I’m not the Franson’s; and all my problems seemed so small. You’re such an inspiration, thank you.” It makes me feel like saying, “I did not volunteer for this gig, and I do not consider it a privilege to be the worst case scenario designed to make you feel better. Besides that, it’s clear you have no idea; we are not even close to being a worst case scenario; we have been so blessed.”
All frustrations aside, I have to share that Scott went for transplant on May 26th and is recovering extremely well. We found out this week that the old liver, albeit black/green and huge, was cancer free. It’s an overwhelming blessing.
I’m so grateful for all of your support. Thank you, thank you for being here, sharing your vulnerabilities as well as your strengths. I read more than I post, but you all feel like family.
I’m trying to think of the medication that gave Scott such severe headaches. You might want to talk to a pharmacist about the meds you are taking and see if there are any that interact, or are notorious for this side effect.
Welcome to the group, by the way. I hope you feel better soon.
So scary. My prayers are with you.
So, with the transplant surgeon, did he also say you were a candidate for transplant? Is the university there involved in any experimental protocols for cc? If not, I think I might would do some fishing. Everything I have read has given the highest survival rate with early detection and transplant. It sounds like you might would qualify.
The protocol Scott, age 42, went through had chemo/radiation/transplant even though they couldn’t find a tumor; there were only cancer cells. He is recovering from the transplant, but still carries the buried anxieties of it recurring.
The unknown is terrifying. I think you should go back to the transplant surgeon; and research some different facilities. You can get a copy of the University of Utah cholangiocarcinoma protocol by calling Crystal at 801.585.2708. Dr Schwartz is our transplant surgeon. He is looking for more qualifying participants for his research study, and would probably look at your file.
God Bless, good luck, hang in there, and love those babies,
Our prayers are with you and your mother.
Thanks to all for the prayers and support. We’re hanging in and doing well. I’m so grateful for the challenges of recovering as opposed to hitting our head against the wall waiting for a donor.
God Bless and much love,
The liver is in! They will try to take Scott off the ventilator in the morning. No sign of cancer, but we won’t know for sure until the biopsy, or whatever they are looking at, comes back on Thursday. It’s more intense than I had imagined, but so hopeful I can’t complain.
Thanks for all your love, support, and prayers,
ps I’m keeping the blog up to date for all my family and friends. You all are both and invited. bbfranson.blogspot.com
But only tastes good if it’s fresh.
I’m with Charlene. This really sucks.
Personally, my angst has been towards God. My children also receive the brunt of my frustrations.
I’ve been fasting and praying this week for strength and for peace; that God will carry this for me, because the weight is much too heavy. I’m being crushed and have felt as though I am losing my very soul to the anxieties and stress of this disease. It’s not fair that my children need to suffer at my inability to control my tongue. I’ve been at the end of my rope.
I have also been reading old conference talks. Being LDS I have those right in my home, because they come in the Ensign magazine, but they are available to everyone via the internet. There are hundreds of spiritually uplifting talks that give instruction and encouragement to come to Christ.
A talk that helped me yesterday was by Dallin H Oaks titled, “He heals the heavy laden” There’s one by Robert C Oaks titled, “The power of patience” and “The plan of Salvation”, by L Tom Perry. I don’t know how to link, but the talks come up easily on google search engine.
Fasting, praying, reading scriptures and conference talks have been incredibly strengthening and comforting, while everything else has proven to be superficial/temporary. I really have felt a relief, like I am being carried. I wish I had figured this all out months ago……..Ok, I thought I had it figured out. I guess I’ve never needed grace on this large a scale, before.
Anyway, God Bless, loves and hugs, all my prayers, and all that jazz. Charlene, hang in there. This all must work out, somehow. My heart hurts for you along with my own pain at having no control in the direction of this ship. I can only trust that God is steering, and that He is a friendly God who wants the best for us.
I can’t tell you what to expect at the Mayo, but we were run through the mill at the University of Utah. Expect days of intense testing on everything to rule out any other cancers, and meetings, meetings, meetings. The first person we met was the financial counselor. We then met a psycho/social worker (I really did consider her to be a bit psycho). We met the oncologist, the radiation oncologist, the interventional radiologist, the hepatologist, the surgeon, and several different nurse coordinators. Whew.
It is critical to determine who the alpha male/female is; the who has the most say in your care. Ours is the hepatologist who will be seeing us for years and years, while everyone else should just fade out in time.
We are still waiting on the top of the list for a transplant. Scott does not show any tumors at all, but we know that with the nature of this beast, it does not just go away. I really do believe in miracles, but since there is no way to prove that the cancer is really gone, we have to press forward with what they say is a solid cure.
God Bless you on this journey. My prayers are with you.
Our prayers are with you. Hang in there.
Wow. Scott’s not even dying and I feel these things. I feel them so much, I have to pray myself back into the here and now. I can’t deal with the last year and everything that’s happened, and I can’t deal with what’s going to happen. I can only handle today, and sometimes I can only handle the next hour, or the next few minutes.
It gets the most frustrating when I think about all the things I should be doing, or should’ve done. In reality, as a caregiver, it’s everything I can do just to breathe. That in itself is a crushing weight that I pray God will carry for me.
Trust me, if you were magically back in this situation, you would know that you have done the very best you can. We are human; we make mistakes; the Lord will know that it was our best and perfect our efforts. I believe in grace with all of my heart. I must. Otherwise, there is only despair and regret.
Anyway, God Bless,
I couldn’t reply to your email, for some reason it was sent back.
Anyway, we have been waiting actively on the list since september, and it has been excruciating. I stopped his xeloda because he is so sick and prone to liver infections. There was no tumor to begin with, just cancer cells, and he’s been through the aggressive chemo/radiation protocol, so they are not too worried. Also, he had an exploratory laparotomy in september to see if the cancer had spread; the lymph nodes were clean. It’s been a fight we didn’t anticipate, but we are making it.
I’m grateful you and Sonny are doing so well. Thank you for posting, today.
Scott was also diagnosed with CCa around that same time, but we are still waiting for a transplant at the University of Utah, which used to brag of the shortest waiting time in the USA. I’m beginning to wonder if it will ever happen.
Anyway, I will let Scott know you are here. He stays away from the support group sites, because it’s so discouraging to him to see all the things that could go wrong. I know he will love to hear that you are doing well.