I haven't written since before I entered the hospital and that is because I have been fairly down physically and emotionally. Upon entering the hospital last Tuesday the 8th, a number of things have happened and I think Stephanie has kept most of you up to date but here is my take on the last 10 days.
On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected. They started me on IV fluids and that helped my overall situation considerably. Then, we me Dr. Doom. AKA Dr. Murphy, the on-call oncologist. He came in and gave one of the most dire evaluations I have ever gotten. He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go. He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.
Well, Surprise! Not dead yet. This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations. We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).
Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me. We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.
With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool. Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube. Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.
The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure. After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach. It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.
What we have done is now buy some time. I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy. Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.
What will this next surgery buy me? I am hoping for a few years. If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game. I don't hope for 20 years or even for 10. Another three or four would be awesome and I will treasure every moment.
I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next. I will treasure every bite of food and every drink I take. I will enjoy the tickling that carbonated drinks give the back of your throat. I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.
Of course, this assumes that we make it through the next few weeks and the surgery that follows. It is not going to be easy nor is it going to involve easy choices but I need to live. I want to live. I want to see and do all that I can with the time I have remaining. Please keep my family in your thoughts over the next period of time and I will try post more frequently.
W.O.W. ...just wow. In addition to dealing with physically feeling really terrible the "chat" with Dr. Murphy must have felt like being thrown into a wall or like a punch from a prize fighter - that's how it felt over here. :/ Thank heavens for the miracle of saline fluids! I can actually picture them going in and you slowly coming back to life with every drip drip drip. (On a side note - my 93 year old Gran has been struggling with hepatic encephalopathy a complication of idiopathic (hereditary) cirrhosis. We only recently got the diagnosis but for the past two years when she has been in the E.R. I noticed that ONE BAG of fluids would really help her feel better, fluids are truly a miracle rescue.)
ReplyDeleteAnyway I am really glad you were able to show Dr. Murphy your cat side. :) ^^ I am reading your blog out of order so I am also happy to note you are making progress with your liver and that surgery is in the offing. I am also glad that Dr. Boudreaux is cautiously optimistic about you being a candidate for another surgery. When I read this post, especially the end, it reminded me of being at RMCC in the comfy chemo chairs and having an anaphylactic reaction to the drip. A young woman, also a patient, came over and sat with me as the nurses furiously worked the crash cart to stop the reaction. I know this young woman was an Angel because she was the perfect messenger for the words I needed to hear. She mentioned that she had also had an anaphylactic reaction to the chemo and that the Doctor and our Nurse Practitioner had given her the option of stopping the chemo. She said she thought about it for a moment and than said to herself, "stop the chemo ... and then what am I going to do, die???" Her conversation with me and the perspective she brought in the middle of that avalanche of fear gave me the strength I needed to soldier on.
Your will to live and internal fortitude are always an inspiration. I know you are just walking your walk but you do it so well you are "cursed" with being that inspiration. ;)
Big comforting hugs to you all and I am sending you all the strength I have as you forge ahead.
Take care,
Deann