Memories that leave you feeling broken

I was driving to work this morning, and my mind wandered to the place it usually does- thinking about John in some capacity.  Sometimes I think about things he did or said, or our life together, or how much I miss him, or I think about when he was sick....just kind of wherever my mind wanders.

Today I was thinking about how its been over a year since he first started complaining about his arm hurting and went to see the neurologist.  The whole year or so played out in my head, all the way to the point at which he died.  And while I know all of this is VERY real, a small voice in my head said in disbelief "There's no way that actually happened."  It all still feels like some very weird dream.  But nearly immediately after that passed through my mind, a bigger voice in my head immediately reminded me that OH YES, it had indeed happened and yes, my husband suffered for so long with a misdiagnosis and yes, once he was diagnosed it was too late (although we didn't know that at first...) and he did die and he isn't ever coming back.  Cue the waterworks and the feeling of my heart sinking in my chest.

I remember almost everything all too well...

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.

Snippets of emotions before the diagnosis

These came from various posts or conversations on facebook or with friends. I wanted to save them for posterity. >>I wish I had more to say right now. It's just too hard. This was the only place I posted this last night, then cried myself to sleep. His case will go in front of tumor board tomorrow. The bad part is that even with treatment, this is severe enough that he will be lucky if he lives a couple of years. I am going to lose my husband, plain and simple. My children are going to lose their father. 'Not fair' doesn't even cover it. The only 'bright side' (ha!) is that we think we will have enough time to get things together. Take a Couple of trips w the kids, figure out how we will support ourselves after he is gone, spend a lot of time as a family, talk about a lot of things too morbid to write out right now. I'm just happy it won't be super sudden. >>everyone says 'you're so strong' to me but its funny bc I don't feel strong. I feel like a scared kid who doesn't know what the hell is gonna happen and what to do. And has to keep it together for other people. I miss my kids like crazy right now but I don't know how the fuck in supposed to keep it together. And work? How do you work when you breakdown all the time??? How does any person just keep going after these kinds of things, and we aren't even at the truly bad part right now. Life sure is fucking unfair. (Written while waiting on the path report on the longest day of my life, ever.) >>I'm so sick to my stomach waiting for this fucking pathology report. My MIL has been bugging our caseworker and pathology dept and they r working on it 'doing extra stains ' or something like that to confirm findings. I don't know that that means something bad but it FEELS bad. I am struggling like I haven't in DAYS with this. They are promising me a path report today. I NEED it- NOW. I don't care if they want to do extra work, obviously they know SOMETHING and I need to know. I took my Xanax a few minutes ago but I'm literally here, in the bathroom, so my crying doesn't wake up John and because I literally feel THAT sick. I do.not.know.how.to.cope.with.this. I feel like I'm dying slowly right now, like I can't get enough air, like I want to throw up everywhere and scream and cry and hit people and break things and throw a tantrum in the middle of the Neuro floor until someone gives me what I've been waiting almost a WEEK for. I miss my kids, it's been 9 days. I don't want my husband to die. I don't want him to be sick. I just want my boring, normal mediocre life back. (Also written while waiting on pathology, a few days before the above post) >>Waiting is just the worst part. Because everything in me wants to be negative and be all 'this shit is going to be malignant and BAD and I'm going to be a fucking 30 year old widow.' But then the rational part of my brain punches the emotional side and says 'NO. NO IT'S NOT. Everything you know and have read and have been told is that this probably is OK.' But the rational part of my brain also knows that with John's history and now this, that the chances of growing old with my husband are not great and that more issues stemming from his prior cancer are likely to take him away from me way before I'm ready. And take him from our kids. That is 1 billon times harder to deal with than thinking of ME being without him. And because the rational part of me is smart enough to know how likely it is that if its not this it'll probably be something else within 10 years, the emotional part of me is FREAKING the fuck out. Man I am good at holding it together for him (although you guys would've been embarrassed to know me in the ER @ LGMC when they said tumor. Y'all I swear I panicked like he had just died right then and there. Seriously, I'm kinda embarrassed of myself. Anyway I keep a good face for him and stay cheerful mostly and try to make him laugh and joke with me (I'm not always successful....y'all know John...I'd kill someone to have him spend ONE day laughing and being his stupid smartass self to me like he always is. Then I end up away from him and next thing you know I'm trying not to lose my shit or I just plain lose my shit.