All this time, all this effort...wasted

I've had it cross my mind a million times to come back here to writing but it was always too hard. The last time I wrote was for our anniversary- now its after the New Year. Its always too hard to write but then I tell myself I *SHOULD* do it, I'll want to read back on this one day. I dont know when, but I'm sure I will. Or maybe my kids will want to when they are old enough one day. I had written last time that 8 years with my husband is not enough. Now I know that 8 years with him is almost certainly all I will get.

The treatment concensus, so far...

So LSU Shreveport's tumor board and the oncologist here agree on the same basic treatment route- the tumor in John's back has to come out. This unforuntely means that he will most likely lose all or most (but probably all) function in his left arm because the tumor is either wrapped up in or situated in a whole lot of nerves that control the left arm...I didnt see the MRI's for these...now John cant have MRI's because of all the metal in his neck. The oncologist here still wants to Stage his cancer...however our adventure with leaking spinal fluid and the ICU has put a bit of a hold on that. Also, the neurosurgeon said the tumor, or the tons of nerves surrounding it (again, not 100% on what exactly is going on at this spot since we first were just so concerned with removing the SPINAL tumor) are very complex and he isnt comfortable doing the surgery. This means we'll either go back to LSU Shreveport (which I absolutely DO NOT WANT) or to MD Anderson. They have a sarcoma team there and this cancer is considered a sarcoma, so this seems like the best option. I hate that it means that in a few weeks I'll be stuck away from my kids while we sort out what needs to happen with the tumor aside from surgery- any chemo, radiation, etc. It sucks being in limbo. It sucks that John's best option is to cut a 2-3 inch tumor out of his back and lose the function in his left arm (he's left handed). It sucks that we're dealing with ANY of this. It sucks that no one managed to catch this in the last YEAR that he was having clear problems with his arm that shouldve AT LEAST required an MRI of his arm or spine and that we would be probably going through WAY less crap if he had ever been properly treated. It sucks that even with this surgery, my chances of a long term life with my husband are not great. I hate how unfair life is. So right now we wait in the ICU, then acute care, and have John's incision site clear up. Meanwhile we work out getting approval on getting over to MD Anderson so that when he is better he can go see about trying to get this tumor out of him instead of just letting it grow or sit there.

Two steps forward, three steps back

Tonight I'm sitting here writing from the ICU. John's incision started to look kinda bad about 3 days ago. Then 2 days ago I was pretty concerned for it. I kept insisting to the nurse that it just did NOT look right- red, angry, puffy, exuding something that looked like pus... She decided to call the Dr- they wanted to try to get a culture of what was leaking. First attempt was unacceptable, then they took blood, then a second nurse was able to get a culture. The culture was negative and his WBC was elevated, but nothing too crazy. They also did a CT where they could see some pockets of fluid but werent sure if it was infection or what. He was started on antibiotics. Yesterday they prepared us that today he may need to go into surgery to drain the incision site if it was infected. Today I went to see the oncologist who visited J, and John was doing his OT/PT. I thought perhaps the antibiotics were working already and surgery would become a non issue. Boy was I wrong. Suddenly I get a call @ about 10:30 that John would be in surgery within a few hours. They were going to open the wound, clean it out, and put in some sort of wound vac. This would possibly necessate a 2nd surgery and it would likely need to heal from the inside out, and this could take 2-4 weeks. This immediately made me start crying because I had hoped so badly that John would come home for Christmas. He was pulled off the rehab floor (we wented to save as many rehab days as possible!) and went to day surgery. They took FOREVER to take him back and I was SO happy when they came into give him the cocktail of Versed and whatever other amazing drugs they give you before a surgery. My mother in law was with me, so we chatted and I did some work on the computer to pass the hour the surgery was supposed to take. They finally called us to say he was out of surgery but instead of being moved to a 4th floor recovery room, he would be in ICU and would have a drain, not the wound vac, and the Dr would be out to talk to us. That was it. I was in absolute AGONY waiting the 4o minutes it took the DR to come out and speak to us. I was not quite prepared for what I was going to hear- John has been leaking CSF (Cerebralspinal fluid) since his neck surgery and the areas of fluid they saw were pockets of the fluid. The pressure from these had made his incision area "mushy" and all kinds of yummy things like that. The fluid was clear, but they are culturing it anyway. He never complained of a headache, so the Dr said we were pretty lucky that he didnt develop meningitis after this has been building up under his incision for quite a few days. He said because of the "mushy" skin around it, we may still be looking at having to do additional things to the area and even have to let it heal from the inside out instead of reclosing it (the skin is still very taunt and wants to "open" despite sutures and staples) but its wait and see. So now he is here in the ICU for a couple of days, back with his BFF the morphine pump, with a drain coming out of his neck, hooked up to a million machines. This morning he had walked 9/10's of a mile in PT. :/ This will be weeks of healing (he'll go to acute care after ICU)and of course the probability he wont be home for Christmas...we'll get to the tumor board from LSU Shreveport and the oncologist here @ our current hospital's recommendations for treatment of his remaining tumor in another post. Still waiting on recommendations from St. Jude's and MD Anderson even though I think we know what we're doing at this point...we just cant go taking out a tumor from John while he has all of this infection, leaking spinal fluid business doing on. I'm quickly learning you can NEVER take for granted that what you THINK will happen is how things will happen. For now I'm just happy that he is asleep, resting somewhat comfortably, and that I can stay with him tonight. I'm hoping to work from the hospital tomorrow, then get through the holidays (somehow...) and go back to work on Monday when John should be in acute care.