We arrived at the IU Med center with an hour to spare before the appointment (nervous much?). We went to the cafeteria and grabbed some soft drinks and sat down and just talked. I prepared them in case the worst should be said ... based on my research on the internet - it's never a good thing for someone's liver to be so infiltrated with cancer. Not a good thing at all. Miracles do happen. But the odds were against us. We sat quietly as we digested and sipped our drinks as a few tears slipped here and there. I think we all just didnt know what to think, but were just trying to prepare ourselves.
We then grabbed one another's hands and prayed. We prayed for answers ... anything that we could grab onto that the doctors could provide us with. We prayed for peace ... acceptance for whatever news may come. And we thanked Him for His goodness ... we've had so so many wonderful years as a team that we have just been more than blessed. We thanked him for each other. And for Him.
Then it was time to meet with the Doctor. He sat us down and asked Mom to share with him her version of her journey with this cancer. He had seen the CT scans, the biopsy results, her charts ... but he wanted the story. He then started asking her a series of questions to gauge her level of distress over knowing she had cancer. She explained that she knew it was most likely stage 4 and that there was a very good chance she didnt have long to live. He looked at her in confusion and asked her how she was so calm and peaceful given the dire circumstances. He said everyone that came to see him were freaking out, upset, distressed, and not doing well. And here Mom sat without a crack in her voice, without a tear in her eye, and a smile on her face. I'm not exaggerating here - Mom was so peaceful.
"I am a Christian and Jesus lives in my heart and I know where I'm going. If you're not a Christian you are not going to understand. But God is Sovereign and I trust Him and I am excited about seeing Jesus."
He was still very conflicted by her response. It was clear he didn't have faith in God and even responded with "Everyone has a tool that helps them cope and yours seems to be particularly effective." He then took a deep breath and explained that he actually had a diagnosis for Mom. And he was going to break it into 4 parts for us - diagnosis, extent, prognosis, and treatment.
I've broken down his explanation below according to all the notes I took. You will see that the prognosis is more than grim. But know that Mom left that office with not even a single tear, even able to laugh and joke with the nurses. Mom is special, beautiful, strong ... even if it is just Melissa and myself who can see that so clearly. She is.
Happy Mother's Day to Carolyn Lorraine Broughton Neal! We love you!
Diagnosis: Cholangio Carcinoma - he said that there is never certainty around any cancer diagnosis but that he and other doctors he has discussed her results with are 95% sure that the originating source of cancer is in the liver bile duct ... think of them as the drainage pipes of her liver. He said that in any case of certainty around source of cancer they take into consideration any alternative sources that might have a better outcome of survival. He said that in Mom's case there are no other options it could be that could provide a better prognosis. Cholangio Carcinoma is a very rare form of cancer affecting only 5,000 a year. It's usually found in women in their 50's and there are no known answers regarding the reasons for this cancer. This form of cancer can reside in a person's body for 3-10 years before you even begin to have symptoms that would alert you that something might be wrong.
Extent of Cancer - This cancer starts on the right side of the liver, finds its way into the blood stream, and then begins to spread to other parts of the liver ... this is the source (the bile ducts) metastasizing to the liver (stage 4). If Cholangio Carcinoma is found early (which hardly ever happens) then there is a chance they can remove that part of the liver from the body and there is a slight chance that you will survive it. However, this cancer is usually discovered in its late stages as in Mom's case and as such ... does not have even the slightest chance to be cured.
Prognosis - There are no guarantees as to how long Mom has to live. The 5 year survival rate is 0% for inoperable cases. He said that at Mom's stage and condition others have had an on average survival duration of 11-12 months with treatment. Without treatment, the average survival duration is 3-6 months. But ... some have also lived up to 2 years - so you just can't predict the outcome. He did say there is a good chance that Mom won't experience a lot of pain or greatly worsened condition as the cancer progresses ... which is good to hear.
Treatment - Treatment of this cancer helps slow down the process only. It will not cure it. Clinical trials are not a treatment option given the rarity of this cancer, it is not a focus for research. Instead, the standard procedure is IV chemo given once a week (4-5 hours) for two weeks and then a week off. After the week off (so after 3 weeks) they will perform tests to to see if the cancer cells are shrinking. If so, then they continue the same rounds of chemo via IV to help extend her life. Mom will lose very little of her hair with this treatment. She has decided to go forward with chemo treatments as he said there is a chance that it will make the cancer cells shrink and therefore relieving her of the discomfort and pain she feels in her side.
The types of chemo she will be given is:
- Cisplatin with side affects of nausea, low blood count, and tiredness.
- Gemcitabine with side affects of tiredeness, hair thinning, and low blood count
A note from Carolyn ---------------------------------------------------------------------------------------------------------------------------------------------
My two daughters and I went to my first oncologist visit yesterday. To sum up our visit, I have a very rare form of cancer that is incurable. I have approximately 8-12 months. I believe in miracles... But more than miracles, I believe in God. And with Him comes His Sovereignty! I TRUST Him completely with my life, my precious daughters and grandchildren. My VICTORY is in Him!!
"When we all get to heaven what a day of rejoicing that will be! When we all see Jesus, we will all sing and shout the VICTORY!!"
Thank you for your precious prayers!! Praying only for acceptance, peace, and comfort for my sweet girls!
My two daughters and I went to my first oncologist visit yesterday. To sum up our visit, I have a very rare form of cancer that is incurable. I have approximately 8-12 months. I believe in miracles... But more than miracles, I believe in God. And with Him comes His Sovereignty! I TRUST Him completely with my life, my precious daughters and grandchildren. My VICTORY is in Him!!
"When we all get to heaven what a day of rejoicing that will be! When we all see Jesus, we will all sing and shout the VICTORY!!"
Thank you for your precious prayers!! Praying only for acceptance, peace, and comfort for my sweet girls!
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