Lost my blog for a bit...

So, I havn't posted in a while...things have been insane, sorry.Like I said before I spent 2 weeks in the hospital January 20- February 3rd with complications from my Colon Cancer, which sadly is now Stage 4. My oncologist pissed me off with his attitude this time and honestly, I wasn't expecting him to be so defeatist and negative...basically he told me to get my affairs in order, tell my kids I only have so much time, and that I needed to make arrangements for hospice. I had a stomach tube inserted (that has been fun I'll get into this in a bit) and was told I would NEVER eat again, and that having TPN through the tube was not beneficial that there was no proof that having Tpn made anyone live longer than not having ANY nutrition. Hmmmm...somehow, that don't ring right to me...basically it was like " Go home, starve and give up" Luckily, I had a consult from another dr from Pallitive care, who agreed with me about the nutrition and questioned the statement that there was NOTHING they could do for the intestinal blockage issue because surgically I am very iffy at the moment as far as being able to heal well, and he started me on steroids...Guess what? When I was in the hospital on clear liquids only I was fine, when they switched me to heavier liquids it made me sick, but then they switched me to soft foods and I was fine and finally discharged, since I've been home, I am back to pretty normal diet, I just try not to eat things that would be hard to digest. Yes I still have the stomach tube, though I want it OUT. It was inserted only to relieve nausea by draining my stomach contents if needed, and thanks to the steroids helping clear my intestinal inflamation it's not needed. Now, here's how they screwed me up THIS time...The stomach tube it had bumpers, special tension sutures, I could have sworn the Radiology Surgeon said would need to be removed (I  was groggy from pain meds so i wasn't sure), guess what, they weren't  and I was sent home with NO follow up appt made, and NO mention of removing them, even though I questioned it at the hosp. and twice once I saw my Oncologist....it was eating into my gut and tearing the tube incision open...so it got infected, NICE, I went to my dr, showed him or a nurse several times, ASKED weren't they supposed to come out and was told " Oh no, they leave those in to hold the tube in." WRONG.  So after another painful 24 hours where it went from being still halfway out of my flesh that night to being completely INBEDDED that morning, I called the nurse and asked to get an appt to see my surgeon. I go, they look and my surgoen was LIVID, I have never  heard a dr say such stuff about another dr or nurses not doing what they are supposed to, he fixed it (but left the tube said he can't remove it without an order from my oncologist) and sent me to wound care...so it's MUCH better and healing better than we expected. So once again, a medical screwup was made on me...that's what now?  OHHHHH wait, I forgot, the port that was put in at UVA- my surgeon fixed that too, because they placed it incorrectly (and he flat out said so when he fixed my tube issue) and it broke off, so that is 3 fd up ports I've had ...I think I'd be a millionaire if I ever got anything for all the screw ups, talk about malpractice suits!?!

Anyway, I started Urbetux (chemo) at my insistance, have had 3 treatments now, and aside for the lovely painful acne rash it causes on my face and gut, it hasn't been bad...I feel pretty good, pretty normal, I seem to be as healthy as I was before my intestinal flare up, and I am determined to defy his single digit months expiration date he gave me...Speaking of which I just kinda broached that to my girls last night...Emily mainly I made realize that I will most likely not ever get to see get married or have kids, we cried together, I apologized to her, and told her I didn't plan on following the dr's assumptions, that I planned on proving him wrong, but that it was out of my control...great, now I'm crying.

Anyway, that's my update for now.
Gwen