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I know it’s not easy to see your daughter like that but continue to stay strong Pam. I know you will get her through this. I think about you guys all the time and continue to keep Lauren in my prayers.
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.
I’ve Ben thinking about you and Lauren all week. Please let’s us know if she is continuing to do well. My prayers are with you.
That is a beautiful poem!
Such good news Pam!!! I will continue to keep Lauren and you in my prayers.
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!
Thanks Gavin and Lainy for the kind words. I’ll be taking my iPad with me and am hoping to be online tomorrow evening!
I’m so glad you came to a decision and Dr. K isn’t giving you a hard time about training the new onc for the pump. I bet you feel more at peace now. I’m really happy for you. Good luck on 4/1.
I feel your frustration Kris. I had a very similar experience with my gastro doctor back in early 2011 when I was so sick and no one knew what was wrong with me. As soon as I called his office and asked for all my records, he called me back acting as if we never discussed how much pain I was in. He then ordered an CT scan and found the mass. But I still left him because I had no confidence in him.
It’s a little more difficult to make changes with an oncologist especially after you’ve been through so much with her. But you have to decide what’s best for you. I do think you should hear her out and then decide if you want to change doctors or not. I agree with Pam – try and get her to discuss on the phone with you since the travel time to her is so inconvenient for you.
I wish you best of luck in making your decision. I’m being treated at Sloan but my oncologist was a Sloan doctor at the satellite office in Basking Ridge, NJ. Now I’m going to Dr. Karyn Goodman, radiation oncologist for the SBRT. Dr. Yoon is the surgeon doing the procedure to put the spacer in between my stomach and liver so that the SBRT doesn’t hit my stomach. He’s doing that this coming Monday and I have to stay in the hospital a few days for that. Both Dr. Goodman and Dr. Yoon are in NYC and that’s where I’ll have the surgery. Have you had any dealings with either of them?
MaryMarch 22, 2013 at 2:05 pm in reply to: Not sure if people here believe in God… but please pray for my mum. #70053
I’m so sorry to hear about your mother. Please stay strong and hang on to your faith. My faith has gotten me through this for almost two years now.
Do you and your mum have someone else helping you to understand this all and going to doctor appointments with you? It may be a good idea to get another opinion. What treatment is you mum on and how is she handling it?
I will definitely keep you both in my prayers.
I’m so excited for Lauren to have this surgery and come through with flying colors!!! I will be thinking of you and Lauren on Tuesday. You will be in my prayers along with the surgeon doing the surgery. How long will the surgery take?
I’ll be waiting to hear the GOOD news as soon as you can get on the computer and let us know!!!
Peace and health to Lauren!
This is great news!!!!!!!!!!!
I’m so happy for you!!!!!!!!
Soup recipe sounds really good. I’m going to make it this week! Thanks for sharing.
I hope your Dad is doing better.
Lainy & Marion,
Thanks for such kind words – it really does lift my spirits to hear such warmth come through my computer!!!
Lainy – sound like you have the same sense of humor as me and my daughter. After we met with surgeon yesterday, and were waiting for out next appt, we sat there laughing about a few things the surgeon said to us. He did not sugarcoat anything!!! But we are straight shooter people to so we appreciated it. Also funny how confident surgeons are. But as my daughter said to me – would you want a surgeon who wasn’t sure what he was doing???!!! Have to keep the humor – that’s what gets us through this all!!!