pamela
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Randi,
It is so nice to hear good news. I am so happy for you. I hope all your scans from now on will be “good scans.”-Pam
That’s ok Susie. I figured that was the case. I know you are such a sweet person and want to help that you would never ignore me. I can’t even remember what I said to you. Oh, well. I will talk to you on here. I hope you are doing well. Lauren got sick last night for the first time. I think she ate something too rich for her stomach. She threw up a bunch. She has had a really bad headache for a few days. Like a migraine. Her neck above her port seems to give her pain sometimes. Her shoulder pain has been bad lately too. I called her oncologist’s nurse and she said to drink something with caffeine in it and take a hydrocodone. So she drank a few Coke Zeros. It seemed to do the trick for now. The nurse said she could have been dehydrated and that will make you feel terrible. She takes morphine every day, but hydrocodone only once in awhile. The nurse said to get poppin’ those pills a little more often if she is in pain. She doesn’t like to take a lot of drugs, but if she wants to feel better I guess she’ll have to. Well, thanks for dropping me a line. I will talk to you later. Take care and God bless you.
Love, PamThanks Susie. I think of you often and pray that you will stay well. I am sorry you have to go through all of this. I am in your corner, kid.
Love, PamThank you Pam. That was so sweet. I read some of your posts and I am sorry your dad had to suffer with this terrible disease. I am sure he is watching over you and is proud that you are such a caring person. God bless you.
Love, PamThanks so much Lainy and Marion. You two are my shining angels on this sight. Marion- I took the period off the end of her caring bridge sight at the end of my sentence and it works now. Thanks for pointing that out to me. Everyone on this sight is just so caring and special. I have never experienced anything like it. So much love. I guess it’s because we are all in the same boat and can all feel each other’s pain. Bless you both and continue with your words of wisdom. I love to hear from you!
-PamHi everyone. Thanks for all your kind words. I started a blog on Caring Bridge. That is why I don’t write on here too much. It is http://www.caringbridge.org/visit/laurenkunklier I think a few people on here have visited the sight because I mentioned it in the blog section of this website. But, believe me, in all my spare time I do check out this website. It is so informative. It used to make me so sad because so many members have passed away. I must have toughened up some because I can read things without crying. Believe me, I still cry at a lot of posts, but not as much on a daily basis. I just want to learn as much as I can and be informed so I can question the doctors and make sure they are doing everything they can for my daughter. Lauren still does not want to know too much about her cancer. I think it scares her too much. She just wants to be a regular kid! I know she is 25, but she is still a kid. She asks me questions if she has them and I answer her truthfully. I guess if you think about it, why does she need to know all the bad stuff. Just let her live life to the fullest and enjoy things while she is still able to. She is still doing well. She has had 3 rounds of chemo. Not too many bad side effects. She gets tired the week of her chemo, but other than that not too much else. A headache now and then, and pain in her right shoulder. I am so thankful she has not had nausea like most get. A little now and then, but nothing major. She has never had jaundice or itching. She had side pain before being diagnosed. Now, she doesn’t have that much anymore. I am hoping that means her tumors are shrinking. At least we get to spend a lot of time with her. I get the saddest when I think of how life would be without her. Not hearing her laugh, not seeing her beautiful face, not having her to sit next to me on the beach, not seeing her walk down the aisle… We were always the lucky family. Sure, we struggled when we were first married. Our children were all healthy and happy kids. They never gave us trouble. We were a happy little family. If anything happens to Lauren, there will be a huge hole in our world. We try to be strong, but it is harder than I ever imagined. Thank you all for your support. I know you all know just how I am feeling. I wouldn’t wish this on anybody. Bless each and every one of you dear people.
Love, PamI am so sorry for your loss. My daughter, Lauren, was diagnosed with cc on Aug. 29,2011. She is only 25. I do understand how your world was turned upside down. God bless your family. It must be such a hard time for you. I do believe Sara will be with you forever in your hearts. I will pray for you and your family to find peace in Sara’s memory.
-Pam
My daughter, Lauren, receives her care at The University of Michigan Hospitals .
Her oncologist is Dr. Mark Zalupski.
Her liver specialist and surgeon (if she is ever able to have surgery) is Dr. Christopher Sonnenday.
Dr. Zalupski is more to the point kind of doctor. Dr. Sonnenday is very warm and caring.Dear cnicholls, My family was in the same place as you are about a month ago. My daughter, who is 25, was diagnosed with cholangiocarcinoma. We had never heard of this or ever dreamed one of us would get cancer. For awhile, we all walked around in shock and disbelief. We all cried constantly. Except for Lauren, my daughter with this terrible cancer. She cried a little. She has been so strong. She is the one that comforts all of us. I don’t know where she gets her strength. I’m sure with whatever you are diagnosed with, you will be the same for your family. I understand exactly how you feel. It is so scary. I found, other than this website, anything else I read about cholangiocarcinoma was very disheartening. So I don’t read them anymore. My daughter refuses to read anything negative. She says even if she has 1/2 of a percent to get better, she will fight to be in that percentage. She has already had two rounds of chemo and feels better. Keep a positive outlook, love your children every day as much as you can, and enjoy life. Our family was always super close, but now you could never break us apart. Just know that you are not alone. God bless you and good luck. -Pam
Off to Michigan today for Lauren’s second round of chemo. How do I quit crying? Some days I am so strong, but then out of the blue something will set me off and I cry and cry. This whole cancer thing just breaks my heart. I would trade places with my daughter in a heartbeat. What did she or any of you ever do to deserve this? It’s so unfair. Bless you all. -Pam
Hi Marion. Thanks for your kindness and words of wisdom. My daughter, Lauren, is the one with cancer. Simple mistake. I’m sure I was rambling on my post and names were confused. Anyway, thank you. -Pam
Dear Byron, Lainy, and Cathy, Thank you for your prayers and warm wishes. I send the same back to you. Lauren started out having pain in her right side early this year. It came and went and we thought it was her gallbladder. She went to one of the doctors in the family practice we go to. He ordered an ultrasound, but told her he thought her pain was from having bad posture and she needed physical therapy. She had the ultrasound and the doctor never called us with the results. So we figured nothing was wrong. Then, life went on until August. Lauren wanted me to call and get her a doctor’s appt. because she still didn’t feel that well and her side and back still were bothering her. She seemed to get full really fast and felt kind of bloaty. I had kept telling her to make another appointment before this, but she kept putting it off thinking it was just her back. The doctor she saw before was on vacation, so they told us we could get appt. at another office. I think that was a blessing to us. The next doctor looked at the ultrasound report from the previous doctor and could not believe he never notified us. It said she had a large mass occupying much of the right lobe, caudate lobe, and medial left lobe of the liver. He ordered lab tests and a CT scan. This also showed what they called a huge mass on her liver. Like 12×14 cm. He referred us to a gasroenterologist, who promptly referred us to the Cleveland Clinic. My daughter, Kristen, is a 3rd year anesthesiology resident at University of Michigan Hospitals. She spoke with a liver specialist there and he got us in to see him really quick. So instead of going to the Cleveland Clinic, we went to Michigan. She has had a chest CT, MRI, liver biopsy, and PET scan there. He broke the news to us that Lauren had bile duct cancer. He also told us that her main tumor was the size of a cantelope. He said at this time it is unresectable. He referred us to an oncologist that said it is uncureable and nobody lives past five years. It felt like he was being mean, but he wasn’t giving us false hope. The liver specialist seemed more optimistic, so we are going along with his thinking. Lauren started a clinical trial where she gets Gemcitabine, Cisplatin, and Fluorouracil every 2 weeks. The Fluorouracil is given for 48 hrs. through a pump she wears. She has had one treatment so far. We are going back to Michigan for another treatment this Monday. She has gone on a medical leave at her job and I have quit mine to take care of her. She is on morphine and hydrocodone for pain. Takes morphine 2xday. Hydrocodone as needed. She takes Zofran, compazine, and ativan for nausea. The main pain she had after chemo was headache, shoulder pain, her regular right side pain, and constipation. She is like a new girl this week. She feels so much better. I f anyone has any more questions, ask away. I told Lauren about this website and she is going to sign up too. Then you can talk to her. We live in Uniontown, Ohio (close to Canton). So we travel a long way for her care. (200 miles each way). But we think it is the best care she can get, so we will continue. We are optimistic she will be with us for a long time. Thanks for listening. -Pam
