leolangheim
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Thanks everyone. You are all such a source of inspiration for me after so many times when my docs have been negative despite not even having had any experience with metastasis post liver transplant. Even my chemo doc mentioned that in healthy post liver tx patients (read: no cancer) they see clotting in a pretty decent percentage. I like that vs more mets.
Love and light to you all my friends,
-leo
Rick,
I’m sorry to hear that. I had a few bouts of that while going through the protocol and they were awfully painful. I’d put them up there with kidney stones (which I also had the joy of experiencing during that time). I’m hoping a round of oral antibiotics kick it down for you.Keeping you in my thoughts and prayers.
-leo
Great question Rick. I’ve been wanting to do this lately too but I have been worried that it would bottom out my energy. There’s things around the house I’d love to do that would qualify as light such as walking behind our power mower (yard’s looking ridiculously shaggy right now) but my onc has been so adamantly against me being in the sun too much with all the chemo. Then again, I would thing mowing on a foggy morning or just before it gets too dark might be okay.
I also want to try doing some walking on the cruise as that’ll be very possible both in and out of the son.
Rick,
I’m sorry to hear of the bad news. I hope your vacation in Florida is going well my friend. I hope your appointment with the onc went well. I’ll continue to keep you and your family in my thoughts and prayers every night.With love and light,
-leo
Thank you for all the suggestions and support everyone. I’ll be asking my oncologist about cyber knife and brachiotherapy possibilities this coming week. I’m nervous about starting chemo tomorrow morning but I am also anxious to feel like I am doing something to fight back.
I feel like I am starting to cope a little bit better each day but I’m still having trouble sleeping more than 4 to 5 hours a night. I wake up in the early hours of the morning and then my mind starts racing and I can’t shut my brain down enough to go back to sleep. I’ve always been a light sleeper and this is definitely not making it any better.
I am sure it’s just me looking for someone or something to blame, but I am still frustrated feeling like I didn’t receive everything from the Mayo Protocol the same way that they do AT the May Clinic. I had a friend go through the protocol at Mayo in AZ a month later than I did and his treatment included brachiotherapy. I understand the extra wear and tear on bone marrow, organs, etc, but can’t help but wonder if that would have made the difference for me.
Then again, my chemo oncologist pointed out that I didn’t have any clear tumors unlike my friend who was transplanted at Mayo. I believe he actually had clear ones but I’m not 100 percent sure. It was also my oncologist’s (and I believe the UW Hospital Tumor Board’s) assessment that this had likely seeded before I even underwent much of the protocol towards the middle of last year. Is that really possible? Can it lay dormant for a long time at small enough sizes to not be seen on scans? If so it’s possible it had been there a while and then it just went bonkers when I was put on all the immunosupression post transplant.
It’s that slippery slope of my brain right now. I’m sure if I went directly to Mayo last year instead of staying at UW I’d either have been transplanted (with the same results post transplant) or been rejected outright if they had found something UW hadn’t. I’m having trouble shutting off this thinking right now thought.
The ridiculous part of all of this is that I’m sure if I had the therapy and/or went to Mayo, the results would be the same and then I’d be grasping for other straws.
Thanks for listening.
-leo
Thank you again for more replies everyone. I am deeply in the muck of it now. I am vacillating between anger, sorrow, frustration and hope. I know this is part of grieving and that it makes sense after my diagnoses, but it’s not making it any easier to sleep or get on with fighting just yet.
I keep getting frustrated feeling like my docs missed something during my Mayo Protocol by NOT doing brachiotherapy but my oncologist is of the impression that 1. they had no target because I only had ‘suspected’ CCA until after they looked at my old liver post tx and 2. he strongly feels this has been seeded for a year possibly a year+. Did I screw up by not going directly to the Mayo Clinic?
I jump from there to anger and frustration that I don’t know how much time I have left with my beautiful wife and wonderful, young son. When I do that I just feel like breaking down and crying because I want the world for both of them. My son’s better off having me in his life for a few years vs. never, right?
I can tell I was grinding my teeth on some of this last night. i woke up at 5 with a splitting headache.
Anyway, thank you all for listening.
Love and light,
-leo
Thanks for the added replies folks. My doc has talked about removing it, but with the hot spot near my bowels they want to wait and see how chemo works. My oncologist isn’t convinced that the spot in my omentum is the only place that it seeded. He doesn’t want me to undergo a rough surgery only to be too weak to reup on chemo and to see it flare up in various other places.
Rick,
Thanks for all the support you have given me and continue to give so willingly. I still remember chatting about J-pouches way back when. Life seemed so much simpler when I was just struggling to recover from my total collectomy back in 2001/2002.I believe that the chemo they are going to start me on is going to be Gemzar IV and 5FU/capecitaben (sp?) oral. I can double check in a bit but I don’t want to wake up my son by heading out to the car for the paperwork they gave me. He’s thankfully napping right now.
Thanks,
-leo
