lisas
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Well, I just turned 56 in August, was in the best shape of my life (so I thought), eat very little sugar or processed food, never a smoker, light social drinker (wine with dinner), eat lots of fruit and vegetables, don’t eat much red meat, had zero other preexisting health issues, took no prescription medications, had no family history of cc or conditions that could lead to it, did spin class 3x week and finished a 100k bike ride the week before I was diagnosed with CC.
I have traveled in Asia some, but never anywhere remote. Could I have gotten flukes from eating fish from overseas? Who knows. We do eat a lot of fish.
So, I guess I’m saying … go figure.
I am looking at it like it’s a being a lottery winner, only in a sick, sadistic reverse twist.
Gosh, I can’t believe I haven’t been online here since October 17! So sorry – there is much going on in my world. My oncologist and surgeon here felt I needed the PTC procedure immediately, as I was extremely jaundiced, itchy and full of, well, bile that wasn’t going where it needed to go. I did that procedure here at Baylor in Dallas 10/14. It went well. I spent 2 nights instead of one in the hospital because I had nausea (so we thought). I was sent home on Wednesday, 10/16 and that’s about where I stopped posting. I couldn’t keep anything down and by Friday, I was back at Baylor in acute shape with severe dehydration. We spent the weekend getting me hydrated and then lost a day or so when the young internist assigned to me just kept treating me like I had nausea and not looking elsewhere. Finally, my husband said, well, what does Dr. Goldstein say (my surgeon – although he didn’t actually do the PTC)? Long pause…. who is Dr. Goldstein? Um, head of Liver Transplant and big dog at Baylor. Well, once Goldstein got involved, things happened and they figured out that I had two blockages preventing anything from going in or coming out my digestsive tract. One was a plump lymph node (although no sign of cancer cells in it) and the other was where the tumor was wrapping itself around my duodenum (?SP?) and basically choking it off. Before I knew that, I was worried the PTC was going to kill me, I felt so bad (it actually turned out to have gone so well, they took the external drains out way early).
So, I was back in Baylor for 9 days and I had a procedure called a gastrojejunostomy (gastro J), which is, in essence, part of what they do in a gastric bypass surgery. They rerouted and attached my stomach to avoid the blockages, which couldn’t be removed. So, I missed 2 weeks in the hospital and home recovering. While they were doing that, they went ahead and put in my chemo port and a feeding tube to use as a back up in case I had trouble recovering from that surgery or from the upcoming chemo.
I’m learning a lot (not that it was stuff I wanted to know) and I’ve lost all sense of modesty at this point.
I go back to the surgeon Thursday to check his work, but I think I’m healing well.
In the meantime, Dr. Chapman at Wash U did review all my scans, reports, etc. and was in full agreement with the folks at Baylor that my tumor is not, at this point, resectable. He was in agreement with chemo course we have planned. And, in the best news of all, my insurance only billed me $9 for his consult. Best money ever spent. Thank you to all who recommended him. Once we see if this is shrinking, I plan to have him take a look again. I want it to shrink enough to be removed, but placement is another sticky issue – mine is wrapped tightly around both sides of the biliary tree. It hasn’t spread, but it’s just in the worst possible location.
I go to chemo class this afternoon, whatever that is. I am supposed to start chemo Friday, but am still waiting on approval from Blue Cross. Really? I just spent 12 days hospitalized, had every alphabet test known to man and they drag their feet on approving chemo?????
So, all in all, I’m hanging in there right now. I lost about 15 lbs over October and it was weight I did not have to lose. So, I’m moving slow and in very baggy pants. My husband has been an amazing caregiver. I am trying not to overwhelm him with being needy, but I don’t always succeed.
I was told by several medical friends in high places that they felt I was in a better place at Baylor than MDA for this particular cancer because of Baylor’s top liver transplant program. And, it’s 8 blocks from my house. I am very happy with my oncologist, he’s kind, but no nonsense and isn’t going to blow smoke up my skirt needlessly. He’s anal retentive and I like that in a guy whose job requires it. All my primary care doctors (and my surgeon) said he was the best and the surgeon said he brought his own brother down from Tennessee to have him treated by Dr. McCollum.
Anyway, that’s my rest of October/into November. I went back to work yesterday for the first time. I’m working from home today and tomorrow.
Hope you are all hanging in there,
Lisa
I had my PTC procedure Monday. They kpt me a second night because I had difficulty keeping even liquids down. They let me go home yesterday and, again this morning, I had trouble keeping liquids down. They’ve given me some good meds to stop throwing up.
I do feel better after the PTC. The abdominal area where there are inserted is sore and the tubes are kind of a pain. Not to mention gross to empty. But they are draining.
Just spoke to Dr Chapman’s office in st louis and he does not feel I am a candidate for resection now, without chemo and radiation to shrink the b@st@rd first. So, he’s in agreement with Dr Goldstein here.
That’s what I know today.
That is exactly what they’ve done. They had to cut dose in half to administer it. Unbelievable burn.
Oops, meant to post that ^ on my page. I’ve got an iv in one arm and running on no sleep. Sorry.
Lisa
Well, I’ve already heard from dr chapman’s office and he wants to see me – maybe this week. That will depend on whether I can travel this week after this ptc procedure. Imhaving to get potassium drips before the surgery. Not fun.
My email is on my profile or just send a message to the blog. I’m having a procedure this morning, overnight here at bsylor amd may be groggy for a few days, but I will respond.
Thank you Mark. You know, that was brother’s name.
I’m waiting to hear fr radiology re what I need to do for pct Monday. Honestly , it will be the first time I’m ever spent a night at a hospital.
Spoke to dr goldstein’s assistant and she getting all my records ready to ship to dr chapman.
Things are moving fast. I’m just trying to stay above water for most of it. I’m gonna take the weekend to go hang out with old college friends.
Lainy, thank you. I actually started a blog recently and I wrote about both of my JDRF rides and what they meant to me. Even though it’s a different disease, maybe it would help someone. Happy to have anyone read it. Link is http://fiftyfine.wordpress.com (I think). I don’t know if you have to sign up to read it or not. You certainly don’t have to start a blog or anything.
Gigi,
I don’t know where you are in Texas, but if you are in the Dallas area, I’m happy to talk to you (well, really, I’m happy to talk no matter where you are, but if you are Dallas we could sit down sometime). I lost a sibling 2 years ago (not to CC, but it was very sudden and unexpected). I posted some of what I did on oceangirl’s thread a few minutes ago.
The other thing was to find something that meant something to me to do. For me, since my brother died of complications of diabetes, I got involved in doing the JDRF Ride to Cure. At the time I signed up for the 2012 ride, I hadn’t been on a bike in years, but I signed up way in advance and I had something to do and focus on – training. And fundraising. My sister and I raised over $9000 that first year. I did the 2013 ride the week before finding out I had this. But, being involved in that community helped me tremendously.
I don’t know if there are any events like that – even local walks – for cc. It’s such a small number, maybe there aren’t, but you know, the squeaky wheel gets the grease, so maybe it’s time to make some noise and create an event. That’s how Koman grew. From one tiny promise to a sister.
There is definitely something helpful about wearing a favored article of clothing. I’m still wearing my brother’s watch.
I’m so sorry for your sudden loss. In my experience, the people who talk about closure or who say it’s time to move on don’t know what they are talking about. There’s no closure here. There is, however, trite as it sounds, the passage of time that lets fewer tears leak out and more smiles at happy stuff. There are grief bombs, that come from nowhere, along the way. You just have to ride through them the best you can. Don’t feel bad if you feel paralyzed one day or if other days, your brain is, at best, a big blob of oatmeal that can’t be stirred.
You might read The Year of Magical Thinking by Joan Didion, who wrote it after her husband died, very unexpectedly. It’s about that first year as a widow. I read it after my brother died.
My thoughts are with you,
Lisa
oceangirl wrote:Thank you Lisa for your very comforting words. They really touched my heart. I am always amazed at how warm and loving virtual strangers can be in the face of tragedy.Oceangirl,
Everyone is different in the way their grieve – although I stand by the grief is a process, not an event statement. Don’t be afraid to think outside the box. I don’t know your brother, but mine was a free spirit, a world class athlete (pro snowboarder) and lived his life between the mountains and beach (avid surfer). In lieu of a traditional ceremony, we had him cremated and, although this was a bit weird for my 80-something parents at first, we sent small containers of ashes to his friends (who were all over the planet). We asked them to scatter them in a place that had meaning to their friendship with Mark (my brother). We asked for a picture of them there and for them to tell us what they did. Well, it was amazing. He is on every mountain he ever raced at and loved (several of those events occurred where they scattered ashes and told stories and caught the last ride of the last day of the season, went down and drank beer and told more stories – and there were a lot of stories about him), he is on every beach he surfed and loved. Two different friends climbed to the summit of Mt. Hood (two separate climbs) and scattered ashes there. He’s in Alaska. He’s in New Zealand. A friend of mine who didn’t even know him took some with him when he climbed Mt. Kilimanjaro, which he summitted on what would have been Mark’s 49th birthday. Just because we thought it was a cool thing to do. We, as a family, scattered ashes in an out-of-bounds area at Vail. He’s at multiple spots at Lake Tahoe (and in Lake Tahoe). He’s at Telluride. I started doing the JDRF RIde to Cure (he died of complications of diabetes) and his ashes rode with me around Lake Tahoe and a 100k ride in Nashville two weeks ago. I scattered his ashes at the finish line of both rides, knowing he never crossed a finish line he didn’t love. I love knowing he’s out there, in places he loved. I feel him all around me that way. Plus, I’m wearing his watch, typing on his laptop and wearing his favorite fleece. In short, find what’s meaningful to you and do it.
I guarantee you, whether it’s this damn cholangiocarcinoma or I get hit by a bus while I’m cycling … I’m doing exactly the same thing when the time comes.
I’m seriously happy to talk about this anytime. My email is steglaw [at] yahoo.com and I’d be happy to give you my cell. Like there is a band of people affected by cholangiocarcinoma, there is also a band I’ve called the lost sibling club. There is strength in talking to those who have walked through that door before you.
Lisa
In less than 48 hours, I can say I am amazed at the support I’ve gotten from this forum. Thank you so much. I had several personal emails (note to future members, PLEASE put your email contact in your profile). I have spoken to Dr. Chapman’s nurse and my doctor and they are making arrangements to get my records up there for review, which he can do initially without my being there. If necessary, I can hop a plan to St. Louis.
In the meantime, I am scheduled for the PCT on Monday, as Dr. Goldstein feels it is urgent to decompress my liver. That is going to have to be done no matter what else happens. It doesn’t sound fun at all. I’ll be having it at Baylor, which is less than a mile from my husband’s office and our house.
Lisa
Just a quick note to say that the meeting with Dr. Goldstein was not the news we hoped. I liked him – he is a straight shooter, but my tumor is not resectible and is just over the size to be eligible for transplant. He has some options, but they don’t seem all that great to me. I’m trying to calm myself down to go through the notes, figure out if I think I should get a second opinion (they want to get me in Friday or Monday for a something-or-other-procedure — sorry my brain is working at half speed right now). So, I have to make a decision fast. Trying to gather the strength to go tell my parents the news, which I’ve held back until we had a plan. This is going to be hard. I’m the one who had to go wake them up 2.5 years ago to tell them my little brother had died.
Ugh.
Lisa
Thank you all for the replies! I had a friend tell me last year, while she was battling a brain tumor, that in times of tragedy, special people come into your life for a reason. That is true.
I expect to be an active participant in this forum.
I had two tests this morning – a chest/lung test of some sort (got to find out exactly what) and a whole body scan where they injected some radioactive dye.
I meet this afternoon with the surgical oncologist. My medical oncologist (I went by to get his report to read, myself, before meeting the surgeon) was less than encouraging about resection/transplant. But, we’ll see. My surgical oncologist is the surgical director of the pancreas and living donor liver transplant groups at Baylor. I’ve very fortunate to live where I live, as this is (I think I mentioned) literally down the street from me. Here’s his bio link: http://www.baylortransplant.com/surgeons/goldstein.html
So, I’m still waiting … but expecting more pieces of this puzzle to fall into place quickly.
Lisa
Thank you all. I am a lawyer by training (and nearly 30 years of doing that), so gathering information is embedded in me (and my husband is also a lawyer, so we might be slightly obsessive over getting info, although not a bad thing in this case).
I live, literally, within 5 minutes of Baylor Hospital and the new Sammons Cancer Center. I was talking to a friend who is an RN in a smaller city in Washington State and she was stunned at how fast all this has happened, so I realize I’m in a good place and my primary care physician (internist), GYN, gastrointerologist (for routine colon screens) all said my medical oncologist and this new surgical oncologist are both ‘da bomb.’
It’s a lot to absorb, though.
Yes, the jaundice was my symptom (well, the itching, but I didn’t realize that). Thank God my college roommate noticed and said my eyes looked yellow. I laugh and say that I look like my toddler grandson was let loose with the magic markers (or at least the yellow one) and scribbled on my eyeballs.
Well, I’m gonna try to get some sleep. I had a really hard time sleeping last week, but I have not had any qualms about accepting my internist’s offer to give me a Rx for something to help me sleep.
Must be at Baylor early for this body scan.
During the past two years, I have often referred to the lost sibling club as the sucky club no one wants to be a member of, but I guess that’s true here too. Still, I believe there is strength in numbers and knowledge and, since this is so rare, if we aren’t on the forefront of making noise about it, who will be?
G’nite,
Lisa
