warning: super long post!
I have read many posts and I do agree that this is the best little community on the internet that I wish I never knew existed! So, where to start... I am the baby of three girls. My oldest sister, Meredith, is 5 years older than I am and my other sister, Mandy is 22 months older. We grew up close and my parent's would tell us that we were "the best presents that your father and I ever gave you" and the older I have become the more that is the truth.
So... history. My sister, Meredith, was diagnosed with primary sclerosing cholangitis when she was 17 (1992). The dr at the time told my mom that he wasn't sure when it would present itself. 5 years? 10? 20? Well life went on and my sister graduated from college, married and had 3 kids. They are currently 10, 11 and 13. In these past 17 years, she was diagnosed with ulcerative colitis, Restless Leg Syndrome, Chronic Fatigue, Celiac Disease and had almost all of her colon removed. She used to be a teacher and was very active. Now she is on disability and care barely function.
In September of 2013 she started experiencing a "U" shaped pain from her abd around her side to her back. She made a dr's appt but before she could make it, the pain was horrible so she went to the ER where they ran a lot or tests and scans. They found a "suspicious spot near her Pancreas." She was sent to another GI Dr and more scans. Somehow, information got dropped and we didn't find out the results of her scans for over a week, but when we did, the dr said it was a tumor on her liver. She went to Johns Hopkins and had and ERCP where Dr. Benjamin Philosophe diagnosed her with Extrahepatic Cholangiocarcinoma. I actually don't know what stage it is.
She had an MRI and PET scans b/c there was now another concern about a spot on the liver. Thankfully that was benign and her cancer has not been metastasized. Finally Good news!!! I should note that Johns Hopkins (JHH) is aprox 80 minutes from where they all live and since my sister was at home and her pain not really managed, she would come and go from the local ER.
Oh I should say that at this point, her restless legs were out of control. They previously had her on medication generally taken by Parkinson's patients, but it was not working at all. Her legs were going like she was having seizures. Just her legs though. This meant more ER trips and my parents would video tape it to show anyone that would watch. Finally my mom looked up that low iron makes restless legs worse, but iron supplements make my sister sick to her already upset stomach. She would be up for 3 days and barely sleeping and would be going out of her mind to sleep. She would try everything to sleep, even prescription sleep aides. My mom took the bull by the horns and took her medications from her and dropped her back to basics and gave her Benadryl to help her sleep. That at least gave her some relief.
She is to start chemo and then reevaluate her tumor to see if it can be operated on. Well, her iron is super low (shocking since mom researched that with her restless legs) so they can't start chemo. She just got her port yesterday, but prior to was feeling very sluggish (which is a lot b/c of her chronic fatigue). She had jaundice pretty bad and was scheduled for another ERCP for today at a hospital in PA. So when she got her port she then went to see her Radiation Oncologist who had just received her bloodwork and her bilirubin# was really high and add that with my sister's 101 fever, they sent her to another hospital.
She spent the night there two nights ago and was transported to JHH today and had her ERCP around lunch today. She also had a blood transfusion which I'm not sure if it's because of her low iron or low red blood cell count.
Let me add in just a smidge more info. I had to have a fairly emergency back procedure on 12/7 (they actually did my surg on a saturday!) and my dad has to have his own spinal fusion in July and he is barely walking. So my mom, who fought breast cancer and is in remission, has had to take care of me, my dad, my sister (who moved in with them) and my sister's 3 kids.
[this is super long. I am so sorry]
Oh and her feet are so swollen! She sleeps so frequently and I just feel so helpless. I worry about my mom and how much she can take and my dad, physically, what he can do. I worry about my sister and her kids. They know that their mom is sick, but they really have never met anyone that has had to have chemo and don't really understand what is about to happen. I live in Washington, DC and my family is 2 hours away. Currently, my sister is at JHH in Baltimore.
I am so scared. I try to hold it together for her, but I find myself in tears quite frequently.
She was misdiagnosed and laughed at by a local ER dr (GI) and made to feel stupid and told that her PSC was not real. When people ask me how I'm doing, I really just say "ok." I don't want to burden people with everything that is going on right now. I know you guys understand as you have all been through it. I try not to be negative but those thoughts creep in. Then I feel guilty for allowing them space in my brain.
This felt great to write out!!! If anyone does read it, thank you for having this wonderful community!