Hi everyone!!
Wanted to give everyone an update. Also, thanks for all the prayers and positive energy waves sent my way. What is funny, is all the doctors,nurses, and staff know all about me here at the Cleveland Clinic. I am they're big star. Main thing is because they still do not know what type of tumor that it is or still if it is a desmoid tumor. It is an alien, lol. By the way, I am a Christian, and I am OK with everything. I am at peace, have a positive attitude (most of the time) and have lived a great life, regardless of whatever the outcome is. Thank you again everyone; you all are the best!!
OK, so let me give a better explanation of what is going on and hopefully it will make more sense:
So originally on July 12; Dr. Deitz was supposed to give me just an ileo bag for stage 1 and allow the old j-pouch to stay in place and just let the obstruction and other issues hopefully settle down. Stage 2 was supposed to have the old jpouch removed and new jpouch be made and put in and hooked up, unless it needed to be a stage 3. That was the original plan...
Instead what happened was... he made an incession that went from my belly button to my waist line and had to sew me back up. What he found was a large and hard tumor that was about a couple inches from my spinal back area. He said it posssible could be a desmoid tumor. The problem was that he could not do a biopsy because it was too big and other organs(possibly small intestines was wrapped around this tumor). They did a ct scan to see if there was anyway that they could get to this tumor. They called on Dr. Church and still didn't know what to do. They were all puzzled. They said that radiation couldn't be done and possibly chemo originally. But with the council of other doctors they confirmed that with organs wrapped around this tumor that trying to go for a biopsy I would bleed to death. Doing chemo would risk making the organs wrapped around this tumor go bad. Hope that makes somewhat sense. All the doctors said they have never had this happened before, never have seen a tumor like this.
So this is what they have done and with my decision on it. They have given me a PEG (feeding tube) that hooks up to my stomach. I am feeding on TPN which the dietitian said would be a long time. I can have liquid and such, but nothing solid, of course. Last night they have placed a Hickman in me because all my veins kept blowing up because of all the TPN going in my veins. I should be leaving later this week going to a skilled nursing facility that does TPN, so I can be close to my son. Case management is helping me with that. That will be somewhere in Orlando, FL. Good news is that my insurance with Medicare being secondary pays for all of this 100%. All my deductibles and out of pocket has been met. So that is a true blessing. If it comes down to a hospice then that is paid for too.
In the meantime, hopefully the tumor possibly could shrink(we hope); especially if it is not a desmoid, and finally can get a biopsy. The old jpouch is still there and maybe the 4 old obstructions will go away. And with CT scans, they might be able to do surgery. Until then, I will just have to live with the feeding tube and adjust. It is much easier to clean than an ileo, lol. Worst case scenario is if the tumor causes the arteries to bust, because it is close to them and it did grow to the point to why I have been having so much back pain. It is kind of like a black hole and sucks everything to it. I do believe in miracles and have faith, so I am praying that this can all be turned around and I will have a huge testimony.
Sorry for this being so long, but wanted to explain it better in detail and I hope this makes more sense. Thank you everyone!!
Sean