holly22a
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Randi, you have no idea that it is stories of hope and happiness like yours that give us all some feeling that we share in your good fortune! We are so happy for you! It is a wonderful bit of news and we rejoice with you! Someday I know this disease will get licked and in the meantime, we will celebrate and whoop and holler with every person who wins! xo!
Ha! No baking cookies – – everyone I know has brought me delicious stuff to eat and the house is overflowing! I feel so blessed with all the love, if I’m not careful I sure could gain weight on chemo with all this good food! Thanks for all the good thoughts …. headed to nyc tomorrow, scans thursday, will post the results just as soon as I get them. Merry Christmas and a peaceful and joyful new year to all of you angels!
Because it is Christmas day, here’s a little creche scene I painted on a child’s tangram set:
https://www.facebook.com/photo.php?fbid=3065570914202&set=a.2790432675918.144348.1111384223&type=3&theater
xoxox, HollyOh, Lisa, so sorry it has reappeared but so happy it is only one and small! You are my hero from afar! You’ll get this little pest, I am totally sure of it. Hope you and your husband and children are having a peaceful Christmas together today. I am sending you special hugs.
Yes, it is so hard to wait! Good thing the holidays may keep you a little busier than usual and take your mind off things. I’m waiting on a scan right after Christmas, too. Anything to not dewll on it! I’m singing songs and hanging lights and generally trying to keep it together for my children. Hoping you find a bit of relaxing and that you find some distraction over the next week or so before LOTS of good news!
I am but a cc newcomer but I just want to squeak in and say thank you to you for all you do for all of us here, new ones every day, for sharing, and for tirelessly being on this site with your good cheer. You are a really special person and your Dad must have been so proud. It gives me hope to think of my children after I go. Life does not stop, they will go on. Bless you.
There once was a gal named Rand-i
The toughest cc-fighter in the land-i
She went to a scan with trepidation
But came out with elation
As out burst a clear! song from the band-i!!Thinking all good thoughts. You have rocked this thing!
Holly
Hi Annie. I am SO sorry about your Mom and now your brother. He is so young. That’s also why a second or third or fourth opinion is so, so important. I was basically told to get comfortable and die by three surgeons before the next four all said no way, there’s lots they can do and will probably be able to resect after some targeted therapies. I dunno. It is so very depressing to be working with a doc who has written you off. So get out there and get those opinions!! I so hope you can find another doc for your brother because hopeless is not good at his age and general health. I am not a doc so I know nothing about fluid. But I know the hunt for hope and that’s the path you want to be on. Reasonable hope, yes, but hope nonetheless. You must be an amazingly strong person. I’m just so sorry about the cc in your family. Mine also has a genetic mutation all our own: father, mother, sister, me. but all different camcers. They also think it is because we grew up in Oak Ridge Tennessee (National Lab Site) with all the radiation in the groundwater….whatever the reason, it is so unfair. Hugs to you and good luck.
lovemydad, you are in my thoughts and prayers tonight. I’m holding thoughts of you and your Dad and your family in a peaceful place. No matter the news I see you surrounded with love and your father surrounded with your love. Tomorrow may bring better news. We are all with you and sending you our sympathies and our strongest hopes for better news but also for peace in your heart for you as you are there for your family. You are strong and this is tough, Hang in there. xoxox
AH, thanks for the link, Marion. What a great story from Kim! I will read her book! How inspiring! I hope the day will come that there will be many more transplants for cc. Right now so many of us are too far along, but there is always that glimmer of hope. xo
@Willow, it sounds like your sister and I have a lot in common. You guys can call me if you want to talk or she wants to talk. I get it that talking is also a lot of times NOT what someone wants to do! (202-907-3568) Tell her to hang in there. I’m hoping for y-90 next, too. Hoping for a down-staging, dreaming of surgery. I have tiny tumors all through the liver except one wedge part has fewer and that’s where they would resect to. I have no nodes, no other issues, completely healthy otherwise. Chemo just does not seem to work well on these cancers, I’m not a fan of it. So I call this the whack-a-mole approach to cancer. Hopefully we will all get YEARS not just months with our children….tell your sis I am praying for her, too. She is definitely in our thoughts (I told my family about you guys)
@Nikki, I’m so happy for your father to have this chance at another go! I have great faith in that doctor. Definitely keep in touch (phone number above) as we walk the same path. Tell yr Dad I think he is in good hands there.@Nikki. That is great news! Dr. Kato strikes me as someone who is trying to always push the boundaries of surgery. He may be an academic but he does not seem worried about his numbers or his reputation. He definitely thinks outisde the box. He will try things others won’t and sometimes it works. He seems incredibly smart, thoughtful, brave. I picked him to work with for a variety of reasons – – mostly because his instincts about chemo and radiation resonate with me and my case and all I have read. His interventional radiologist Dr. Sperling is just as smart, aggressive, confidant as Dr. Kato. I have not met the oncologist yet, but I bet it’s the same story.
let’s keep in touch! high-five!At first I froze. I cried. I did find my way to a major cancer center but there, saw the famous surgeon for about 5 minutes, and was sent to Dr. Death, which is what I called the oncologist. It is so obvious that I was going to go in bin A (try to fix me) or bin B (no hope) and bin B it was, and they would make me comfy to die. I hated that more than anything! You want to fight! So I listened to the good people on this forum and made my way to FOUR second opinions. I learned so much and met such amazing people along the way …. and found a team I am excited to be working with. Every other doc said they were truly sorry I had to go through such a demoralizing experience, that there are ALWAYS things to be done for this cancer especially if you are young and healthy and strong. (like your husband) So, anyhow, go and get that second opinion and don’t stop there either until YOU are satisfied that you have found a team you look forward to working with. As to pain, everyone on here says that is not right. I can’t wait to hear about your second opinions! Good luck!! Oh, and you are a saint with the boys. I have 5 children in a blended family from 23 to 14, and the older ones are very helpful to the younger in talking about it… mostly they just want to be kids. In the car the youngest asked about a recent appointment of mine and I filled her in a little and then she said, “ok, Mom, I like hearing about it but now listen, about this guy at school….” So I figure they need to be allowed to live their lives wthout the constant worry we may have. I try my hardest to keep things normal around here. Good luck and all the best thoughts going out to you and yours.
Oh, and Lainy, thanks for all the messages of HOPE! If anyone wants to hear about my rounds I can tell you all about NYC – – about Dr. Kato, Dr, Fong, Dr. Jarrnigan, and Dr. Facciutto. They are all awesome surgeons and amazing people, along with their “apprentice” surgeons and teams. You were all so right about getting those second opinions because having a team you have FAITH in, that they are trying to help you, is the number one step in all this. Ultimately I wanted doctors who think like I do, which might sound really strange, but it is such a subjective, gut-instinct kind of call.
@ willow … 9 is just heartbreakingly young. I’m so sorry for your sister, but happy she has you out here learning and posting and helping her. You must be a wonderful aunt. My main goal in wanting time to is prepare my daughter. It’s complicated because I am divorced and she has lived fulltime with me and her step-father (the love of my life and a wonderful man) for seven years. She sees her Dad for dinner but does not want to live with him. But legally, when I go, that’s it, he will have custody and will never let her live at our house. So … Most children lose a Mom and still have Dad and the dog and their bedroom and house …. but it all evaporates for my daughter. Sorry to go on so. It’s my private nightmare, her future, so I am glad she is a very strong girl and I am trying to live as long as possible!! It’s my dream to see her graduate from high school.
@Marion … thank you so much for the links, very helpful. I have been doing my homework. I think the worse statistical prognosis for cHCC-CC is due to the later stage at which it is discovered. Often, like me, liver function is perfect, there’s no hep C or chirrosis, and no pain at all. I think I have A-L type C. Hoping to find others to commiserate with!
@Lisa – – I AM going to call you! Thanks!!Small update: I have been making the rounds of getting those second and third (and fourth..) opinions and learning as much as I possibly can. I am moving my health team up to Columbia Presbyterian in NYC. Have had two rounds of gem/cis, one to go, then scans, then hopefully moving over to y-90 beads in hopes of being able to take out half the liver. That’s the hope, always the hope. I have one 6 cm, two 2 cm and a dozen little tumors throughout the liver (though no nodes) so I am definitely “behind the 8-ball” as they say. I also do not have a usual intrahepetic cc but a “collision” tumor with mixed properties of both cc and hepatocelluar. I think they call it cHCC-CC. Pretty rare, I gather, and probably originated in a liver stem cell. That’s why it does not act like cc – – the blood work indicates HCC and the pathology says CC. So it is anybody’s guess how things will behave. I know the prognosis is actually worse, but that may be because most are caught so late…not sure. My question is, is there anybody else out there on these forums with this? If so, what has been your experience with treatments? I am hoping to find others like me, Thanks!!
