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...

"How are you?" or "How are you doing?"

I get this question a lot.  Its always THE question people first ask me.  I get why, and I understand the question is generic and well meaning...it also happens to be my LEAST favorite question.

And so it ends...

I have to share the awful news...

When nothing feels "right" anymore...

I hate how nothing ever feels right anymore. Literally, everything feels wrong. I spend so much time wondering how long I will feel like this- if I always will feel like this.

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.

Here is to hope.

John finally made it out of ICU about 2 days ago. He is on the acute floor now. We expect he may return to the rehab floor towards the end of the week. I got to spend a good bit of time with him yesterday, so that was wonderful. His lung scans came back clear, which was FANTASTIC news. Probably the best news we've gotten so far. This means no cancer in his lungs, and that we can proceed to MD Anderson once his infection clears. That may be 2 weeks, it may be 4...we wont know. I'm hoping it wont be until after Christmas so we dont have to spend the holidays away from the kids. Thanksgiving was hard for John (away from the kids, in the ICU) and hard for me too. I tried to go and be with my kids but wasnt feeling well. I picked up some bug at some point and spent a couple of days quite ill. It was terrible not being able to visit John for that time, but he basically slept for 5 days in the ICU so I think it was easier on him. So for now, we work with MD Anderson & our insurance company to sort everything out, get them the paperwork they need, and we will head that way to see if there is some hope they can offer us of...well, ANYTHING hopeful. Any treatment that will give us more time, any treatment that will preserve his quality of life...ANYTHING positive. I'm going there with high hopes and hope that I wont be disappointed. Today is our 8th wedding anniversary. While I am happy he is at least not in the ICU today, its sad that he has missed Thanksgiving, and now we will spend only a couple of hours together tonight. I picked up a cake (similar to the kind we had at our wedding) and a bronze picture frame for him to keep a family picture in his room, and I also got a chalkboard frame with a picture of just the kids that they can write on to help cheer him up. Also, I think I'll maybe bring a bottle of wine or champagne. 8 years with him is not enough. I dont know that even 8 more would be. I want 80! Here is to hope.

I dont like my days without you.

It truly sucks that I cant be with my husband every day these days. We arent far away from each other- he sits in a hospital bed probably 5 miles from me. I sit at work. If you wouldve asked me even MONTHS ago if I wouldve wanted to spend all day with him most days, I wouldve looked at you like you were crazy. When you suddenly become aware of the loudly ticking clock counting down the years, days, months of your loved one's life...sometimes you take on a new perspective or feel a different way. I'm finding that out the hard way.

Still in ICU

So much for being in ICU for 2 days. Now John will likely be there until Sunday. That will make...5 days? I tried to go enjoy Thanksgiving with my family yesterday (parents, my kid, and my aunt) which wasnt really enjoyable. I was happy to see my kids, but things are so hard right now. Additionally, I wasnt feeling well and didnt eat. My mom kept bugging me to eat (dont moms always do that? ha!) but I didnt feel well. I decided to go home and catch a couple of hours of rest before heading back to the ICU because, well, you cant sleep in the ICU for more than about 2 hours at a time. I woke up vomiting, and with a fever. I surely couldnt go back like that and get him sick, and in addition to that, John had started to run a low grade fever and have a slightly elevated heartrate. He also has been nauseated (never vomited though). So the last thing I wanted to do was give him what I had. I called his dad to go stay with him and stayed home and slept. I woke up today feeling *slightly* better (not actively getting sick anymore) but still not great. The worst part is how much I miss John. I'm sad and lonely and I want him better...he was doing SO well and this setback has been very hard. His mom suggested I "suit up" (gown, mask, gloves) and go to see him for a moment today. She's going to pick me up later to do that. I am not going to stay in there long because I still cant risk him getting sick but I just want to see him and let him know I think about him every second. His dad will continue to stay with him. I got a lot of sweet cards and a few gifts today in the mail that helped brighten my spirits. I think if I can see John and talk to him for a few minutes, it will really help brighten my day. My friend offered to come over to hang out after she gets off of work. I initially said 'maybe' just thinking I wanted to have my own pity party but im really much lonelier than I thought since I'm the only one here, so I think I might take her up on the offer. I think I'll stock up on masks though...surely dont want anyone else to get a stomach bug from me. I just am keeping my fingers crossed John gets out of ICU soon. I hate that I will have to go back to work Monday. At least when he was in rehab, I was able to work (for a couple of days...) because he was busy all day. Now he wont be. But they will also start making serious determinations on what ways we have to try and treat the cancer and prolong John's life. That scares the crap out of me, I must admit. I'm worried that we'll get the worst possible news- that the cancer has already spread.

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.

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.

Malignant

That title about says it all, right? All the hoping and wishing I could do or others did unfortunately did not help us. I've meant to copy some of my facebook status and convos here to have a record of how I was feeling all of these 12 excruciating days. John has a "Malignant Peripheral Nerve Sheath Tumor". Part of it is still in him. The neurosurgeons were able to remove the tumor in his spinal canal. We waited days for this report and then HOURS for the neurosurgeon to show up when I knew and had been promised a report by end of day. He showed up at 9 PM with a less than sympathetic description of what was going on. On the bright side, he is beginning to regain use of his body. Its amazing that he was normal less than 2 weeks ago and now cant do anything without help- sitting up in a chair, walking, etc. He can eat on his own- but not at first, I had to feed him for days while he laid flat- and brush his teeth, etc. But he cant shower, get out of bed...its scary, despite the progress he has made which has been VERY substatial. We finally were moved home today- John is in an inpatient rehab facility for PT/OT therapy daily, for an undertermined amount of time- and I'm so relieved that its hard to really describe the absolute crushing devastation of the diagnosis. The cancer is really really rare. The prognosis is not great. But we're still waiting to hear a LOT of things from a couple of hospitals regarding possible treatment so the best place for him is in rehab and the best thing if for him to get better enough to move around on his own so he can begin cancer treatment. I'll have to post more about how bad it was when I have more time. I try to stay positive for him but at least once a day I have a little breakdown on my own, away from John. Its catharthis, I guess.