April 2, 2013 at 12:10 pm #70119
Thanks everyone for your kind words. This has been such a roller coaster for me since my re-diagnosis last month. I thought the doctor was was speaking another language when she said intrahepatic cholangiocarcinoma. I don’t know what I would have done if I didn’t find this website. I’m still trying to come to grips with all of this and try to stay positive and you have helped immensely.
I continue to recover from the surgery last week. I have my simulation appt next Monday, 4/8 and then I have some rest time before starting the SBRT in May. I was lucky to be able to talk to Lisa Craine from this website so I have some idea of what the SBRT entails. I’m still a little anxious but I guess I’ll get through it. Any advice is welcomed and appreciated.
MaryApril 2, 2013 at 3:52 am #70118willowParticipant
Welcome home, Happy Easter and a smooth recovery so you can enjoy your pilgrimage, Mary!
WillowApril 1, 2013 at 8:08 pm #70117gavinModerator
Thanks for letting us know how things are going right now and that is great to hear that you are back home. There is nothing like home after all! Sorry to hear about your pain right now and I hope that you have something for this if it gets too sore. Great that the sun is out and yes, spring is time for a renewal and I so hope that all goes well for your SBRT. My fingers will be crossed for you!
GavinMarch 31, 2013 at 4:33 pm #70116jackson1Member
Good luck Mary. You are in my thoughts and prayers.March 31, 2013 at 1:31 pm #70115lainyParticipant
Mary, I am certainly glad that part 1 is over and you are home. What an exciting trip (better than the one last week) you are about to embark upon. Yes, heal and then fly! I think everything happens for a reason and we may not always know why. God has a plan and he doesn’t feel the need to always share it with us. Rest and pamper yourself you deserve it.March 31, 2013 at 11:23 am #70114
Happy Easter!!! I came home from the hospital yesterday and it felt so good to have the sun shining on my face on the drive home. Spring is renewal time and fresh starts and I felt it yesterday as we drove home. It made me feel stronger and more hopeful!!!
After the surgery to put the spacers in on 3/25 I then had a procedure in interventional radiology on 3/28 to have fiducial markers put in in prep for the Stereotactic Body Radiation Therapy (SBRT). I’ve been in a lot of pain from the abdominal surgery for the spacers – mostly soreness from the larger cut since it could not be done laparscopically – although the surgeon did start out trying to do it that way. Just too many adhesions from previous radiation. So I have laparscopic incisions and then the large incision. My stomach looks like a war zone! Also, a lot of gas and bloating pain which is common after having any abdominal surgery. Thought I was going home Friday but spiked a fever early Friday morning so they kept me until Saturday. Good to be home now!!!
I am scheduled for my SBRT simulation on 4/8 and they will confirm then if the spacers were able to push my stomach and small intestine far enough way from my liver that the SBRT doesn’t hit them when I get the treatment. Because of all the adhesions, the surgeon had a difficult time putting one of the spacers in the exact place he wanted to to ensure the small intestine wasn’t hit. He said it was like hitting cement with the adhesions. He just couldn’t push it back as much as he wanted to. But he and the interventional radiologist looked at the scan that was done right after the surgery and the IR said it may be back enough. She will know for sure when she does the simulation on 4/8.
If all goes well, I am scheduled to start SBRT around the second week in May. I wanted to have it done in April because I am going on a pilgrimage to Lourdes, France 5/1 to 5/7 with the Catholic Church and I was hoping to be done with treatment before I left. At first the interventional radiologist agreed to try and do this for me. But after the surgery, she and the surgeon felt I would be less tired and get more out of the pilgrimage if I just rested and healed during the month April. Then go on the pilgrimage and be rejuvenated and ready for SBRT!!! At first I was upset by this decision but I think it is for the best. I want to be able to take in the whole pilgrimage experience and not knowing what my side effects might be from the SBRT, maybe that would not have been possible.
Sorry for such a long post. Just wanted to let everyone know how I’m doing and thank you for thinking of me. I am so glad I found this website and made friends with people who really know and understand what I’m going through.
MaryMarch 26, 2013 at 4:41 pm #70113marionsModerator
Mary….it is reassuring to know that the little disturbance of prior radiated tissue did not hinder the surgery; kudos for sitting upright in your chair.
MarionMarch 26, 2013 at 2:37 pm #70112gavinModerator
Great to see you posting after your surgery and to hear that you are sitting up in the chair right now! Thats great that you have had your surgery but sorry to hear about the issues you talk of. I hope that your recovery goes well and that tonight is not as rough as it was for you last night. Loads of positive thoughts coming your way as well!
PS – And great that you have your Ipad with you too!March 26, 2013 at 2:33 pm #70111lainyParticipant
Mary, thanks for the update and I am so glad for you that part is over! Sitting up eh? And already posting to us. This is some kind of Family, yes? Just rest up and know we are elated that the Doc could do what needed to be done. Sending you a big hug, on the other hand maybe I should just send my best juju a hug might hurt!March 26, 2013 at 2:14 pm #70110
Just wanted to let you know that I had my surgery yesterday to put the spacers in between my stomach area and liver in prep for SBRT. The spacers pushed my stomach and small intestine out of the way so the SBRT hits only my liver.
Unfortunately, the doctor had some issues and he had to make a bigger cut than usual for laparscopic surgery. The issue was I had a lot of adhesions from the traditional radiation I had last year and it was too thick to cut through it laparscopically.
I’ll probably be in the hospital until Thursday. Had a rough night last night but am feeling a little better today – sitting up in the chair right now!
MaryMarch 25, 2013 at 5:03 pm #70109pcl1029Member
Hoping for the best outcome for you.
God bless.March 25, 2013 at 7:33 am #70108marionsModerator
Mary….a tidal wave of support and love is heading your way – can you feel it?
MarionMarch 25, 2013 at 6:19 am #70107willowParticipant
Best wishes and prayers for A smooth surgery and a speedy recovery, Mary!March 25, 2013 at 12:03 am #70106
Thanks PamMarch 24, 2013 at 9:49 pm #70105pamelaParticipant
Best wishes and hopes for smooth sailing through the surgery. I can’t wait to read that everything went great!!
Love and prayers,
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