kimmie

Glad your Mom’s surgery was successful. My Mom had a resection last July at Univ. of Maryland. Her surgery was also a success (they removed the entire left lobe of her liver), but post-op was rough. She was in a lot of pain that first night, then the next morning I think they gave her too much pain med because she was sleeping so deeply we could not wake her up to do her breathing thingy (a spirometer I think it’s called?) That’s what helps get the lungs inflated better after being under anesthesia. (I know I worded that wrong and spelled it wrong – my sister is the nurse but I’m not!)

Her complications were very high blood pressure, low magnesium, and some spiking fevers. They ended up moving her to the step-down ICU after the first day. She was there over 5 days. Just like Maggie, my sister and I took turns staying with her so she was never alone. She was awakened almost every 2 hours for taking vitals, etc. That part was very rough for her, she ended up with that “sundowner sydrome” where she just had no idea if it was day or night. Luckily, one complication she did NOT have was the incision site – starting healing beautifully from day 1 and didn’t cause her much pain except when laughing or coughing.

My Mom was in the hospital over the 4th of July. She was sleeping that evening, so my sister and I walked out into this area of the floor with big windows overlooking the Inner Harbor. We saw the best fireworks from the best vantage point ever! But weeks later, Mom told us she ended up waking up during the fireworks, her back was to the window so she saw the firework’s reflections on the glass door of her room. She thought she was dying and on her way to heaven with all the colorful lights. Poor Mom.

Once she was home, she slowly but surely recovered. Within a month, she was OK’d to take our long-planned week’s vacation to OBX with the entire family!

Hang in there with her. It’s such a major surgery and takes time to recover.

Hi there! My experience is somewhat similar to yours, but different treatment. My mother, now 63 years old, was diagnosed with a large liver tumor (8cm x 6cm x 10cm) in May ’09, which had not spread anyhere else. She had the liver resection in July where they said they got “clean margins,” chemo started in August (gemcitabine and cisplatin) for 6 cycles to clean up any microscopic cells still floating around. She finished up chemo last December, and her scan showed no evidence of cancer.

We were happy for the first 6 months of 2010, March bloodwork was great, even the CA 19-9 marker. June bloodwork showed elevated CA 19-9, and the CT scan confirmed several smaller tumors throughout both lobes of her liver. Chest x-ray was clear. So our plan of attack now is 2-3 cycles of gemcitabine, check to see if the tumors responded at all, then do TheraSphere.

This website is amazing, and I spend a lot more time lurking then posting. Just reading the boards, searching on a specific question… knowledge is power. I have learned to accept that, because CC is so rare, I do not put a whole lot of faith in the statistics and estimates. Every person is different and may respond differently to a treatment. We heard all those numbers last May, and my Mom is still here! It was tough hearing the surgeon say 6 months with this recurrence, but we’ve since put a palliative treatment plan in place and I do not believe in his 6 month “sentence” anymore. There are some uplifting stories in the “Good News/What’s Working” section.

It’s hard having your mother go through this, I know. We are an extremely close family. My Mom has 3 children and 5 grandchildren, ages 4-11, plus my Dad (although he has vascular dementia and can’t help a whole lot). Do you have siblings? I couldn’t go through this alone, my sister and I rely heavily on each other, talking at least half a dozen times a day. It helps too that she used to be an oncology nurse and is now a hospice nurse.

Hang in there and keep coming here for support and learning – these people are amazing!!!

Kim

I hope my sister sees your post – she is a hospice nurse. I know a lot of what she does – in addition to tending to her patient, making sure they’re comfortable, managing pain, etc. – is being there for the family. Educating them, chatting with them, grief counseling, advice on what to expect as things progress, and just being there for them. She also stays in touch with the patient’s doctors, the social workers, etc. – I guess sort of the “point person” in that patient’s care. She’s developed some amazing relationships with patients’ families over the years, some that still keep in touch with her, and some who she’s cared for a family member in the past and they request her for another family member. (She is amazing. I could never do what she does.)

I also recall her saying more than once that “this patient shouldn’t be on hospice” either because they’ve got a ways to go yet in this life, or whatever condition that originally put them on hospice improved somewhat.

Kim

I am just a family member, it’s my mother who has CC. I’ve been back on this website multiple times a day since a week ago Friday when my mother was told her CC had returned after her resection July 2009 and chemo through December.

I’ve avoided reading this one post, too afraid to read first-hand what you all hate about this disease the longer you deal with it. I should’ve read it sooner though, I have laughed, cried and gained more of an understanding of what my mother must be feeling, and what she may start to feel as it progresses.

Even though I’m not a CC patient, and not even a caregiver (yet), I’d like to add a few:

– I hate that my mother is only 63 and facing this beast.
– I hate this question that’s usually just below the surface of my subconscious and occasionally very much on the surface: why HER of all people?
– I hate that my kids, ages 9 and 11, won’t have her around longer. And that my sister’s youngest, who is 4, eventually may not even remember her.
– I hate that I can’t say or do anything to help her feel better emotionally. I feel like it’s my “job” as eldest daughter to help cheer her up and keep her mind on happier things. But we don’t have the deeper, “tougher” conversations. I guess that will come.
– I hate that there is no solution, no cure, no way to make this go away. I am a “get it done” kind of person, and there’s nothing I can do to fix this.
– I hate that my mother’s soul mate, her husband of almost 46 years, can’t be her rock during this awful time. His dementia has taken our “old Dad” from us and he just isn’t the same. She needs him, we all do. He was always the strong one in the family, the one we all relied on.
– I hate that I can’t sleep well anymore. That my brain kicks into high gear when I turn the light off at night, that I wake up every 2 hours or so, that I lay in the dark and vacillate between optimism and total despair. I swear most nights I hear this faint whisper in my head saying “cancer… cancer…” over and over.
– I hate all the not knowing. Not knowing what the plan is yet for palliative measures for this recurrence, how long she will live, what the symptoms will become as it progresses. Not knowing how I will function as a human being once she is gone.
– I hate that my husband doesn’t understand. He is the most incredible husband, father and son on the face of the earth. He bends over backwards to help me, emotionally as well as with the kids, the house, etc. Always has. But sometimes he’ll ask, “What’s wrong?” Why doesn’t he realize that my mother’s cancer is on my mind 24/7? I feel like that, unless it’s your own mother, you just can’t understand how I feel.
– I hate that many of my friends aren’t sure what to say. That they feel like not talking about it somehow helps me.
– I hate that I never had any desire for any profession in the medical field, that’s always been my sister’s calling. Yet here I am, able to spell cholangiocarcinoma, I know the difference between hemoglobin and hematocrit, I can read a CT scan, that I even know what a tumor marker is let alone normal ranges. That I actually enjoyed watching the TV monitor during my mother’s lower GI procedure – I thought it was the coolest thing.

Whew. OK. That was waaaay more cathartic then you can ever imagine. Honestly, I feel more clear headed than I have in almost 2 weeks.

I echo my sister in thanking you for all your replies. The people on these boards are amazing. I’ve been lurking here since May 2009 when mom was diagnosed and have learned so much just from reading reading reading. Thanks for being here for people like us! I think once things progress with our Mom I’ll be posting with more questions.
“Miracles can’t happen to those who don’t believe in them.” That’s amazing and true. I don’t hold out much hope for one, but I sure do believe in them.
Kim

Hey Michael – parallel lives here, except I’m the daughter and it’s my mother battling CC. I am 40, the oldest of three, with children ages 10 and 8. My children are smitten with my mother as well, she and my dad live 20 minutes away and we try to see her as often as possible.

My mother is 63, and was diagnosed on 5/20/09 (the day after I turned 40!) after a visit to the ER with a week-long stomach virus. Thinking it was diverticulitis, they ordered a CT scan, but instead discovered a 12cm x 9cm x 6cm tumor on the left lobe of her liver. After MANY tests to rule out any other primary cancer source, including a PET scan, they confirmed it was not cancer metastasized to the liver but in fact CC.

Luckily she was a candidate for surgery and had the left lobe of her liver removed on 7/2. (I never knew the liver was the only organ that could regenerate. How amazing.) Her cancer was classified as intrahepatic cholangiocarcinoma, no lymph node involvement and no metastasis elsewhere. The lobectomy had completely clean margins and it looks like they got every bit of the tumor. (The tumor specimen was within 0.3 cm of the surgical margin and weighed a whopping 18 oz.)

After recovering from surgery, and spending a week in the Outer Banks with the entire family, she had a port put in and began chemo in late August. She has three week cycles with Gemzar and Cisplatin on Day 1 and Day 8, office visit on Day 15, then start all over again. It’s a long day for her, because she gets iron and antinausea before the chemo, with fluids in between each, so it’s typically a 6 hour day for her. Lately her WBC and neutrophils were just way too low, so she’s been getting Neupogen shots on Days 2-5 and on Day 9.

All things considered, she’s tolerated chemo like a champ. Some nausea, fatigue and hair thinning, and the Neupogen shots make her bones very achey. But considering some people’s reaction to chemo, she’s doing great.

She is currently on Day 4 of her LAST CYCLE! Repeat PET scan scheduled for 12/21, results at her oncologist appt on 12/29. Hoping for a very GOOD start to the new year…

You said in your original post that so much of what we read is grim, the prognosis is not good. But in my family we’ve found we simply cannot dwell on those “statistics.” We are taking things one day at a time, trying not to think too far into the future. We go by one cycle, one week’s blood results, one day’s chemo. We are a close family, with the added bonus of my sister being an RN, previously oncology but now hospice, so she knows so much. (Though I feel like I could become an RN once we get through this, I’ve learned so much.) We draw strength from each other and from our faith.

My daughter hit the nail on the head… she had to write a paragraph this week for homework about someone important in their lives. She wrote about her Grammy, with supporting facts about how she’s encouraging when she gets a bad grade, how she’s always so happy, etc. The last part said, and I’m paraphrasing because it’s not in front of me, “My Grammy is battling liver cancer, and she is being SO BRAVE!!!!!” (I can’t figure out how to make the hearts under the exclamation points like she did.

Do you have siblings that are involved in your Dad’s life? Having my sister has made a world of difference. We often tell each other we can’t imagine going through this as an only child. And I know it means a lot to my mother as well. It must be so difficult battling CC if you’re alone.

I’m an occasional lurker here and don’t really post, I mostly just read. But your story hit pretty close to home and I felt a strong urge to reply and tell you I can totally relate! Best of luck to your Dad and your family.