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...

A favorite picture

This is probably one of my favorite pictures from the time during John's illness.  Its also one of the pictures that make me cry the most.

John frequently had to remove his wedding ring during his illness- even from that night I brought him to the ER.  Between the 4 surgeries in 6 weeks, the frequent MRI's or other scans, treatments, therapies, or even his 3 radio surgeries (radiation) he often had to remove his ring and give it to me to hold for safe keeping.  John's hands and fingers were much larger than mine and his ring was huge, even on my thumb.  I took to wearing it on a chain around my neck so that I wouldnt lose it.  I frequently would have the ring for days at a time, especially when he would have surgery and be in ICU and couldn't wear it. 

But he would always ask for it back when he was able to wear it again.  I always loved putting it back on his finger, just like the day we got married.

One day after I put it back on him, I snapped this picture. 

8 years and counting, I thought. 

I had hoped we would make it maybe to 9, or maybe even 10. We still believed he could receive some treatment @ MD Anderson at that point that would prolong his life somewhat.  Any amount of additional time wouldve been precious.

I wish we had been right.

These days, his ring is on that same chain I wore, hanging from his urn.  My engagement ring sits in a jewelry box, waiting to be given to my daughter one day as a memento. I've moved my wedding band to my right ring finger.

It never stops looking so out of place on the wrong hand.

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.

Its like a big, cancerous lima bean

So this is John's tumor. Or, actually, its PART of John's tumor. My brains stops listening every time a Dr has to come in to tell me bad news (which has been way, way too many times in the last 12 days- and I'm sure I should expect more once we start oncology consultations) and I end up missing a lot of what they're saying. Luckily I have copies of all the reports. Anyway- in John's back, this bundle of nerves has a "Malignant Peripheral Neural Sheath Tumor". It is (was) sort of "dumbell" shaped because what it did was grow through some area and into the spinal canal (I'm not a medical expert so I dont know the exact terms...sorry, people.) and then it grew and grew in that canal and compressed the spinal cord until John couldnt control his own body. And thats where we are now. Well, we are now short the piece of the "dumbell" that was in the spinal canal. And John is doing 3-5 hrs a day of therapy so he can learn to even do something like WALK TO A CHAIR and sit in it. Its amazing how life can change in a second. Amazing and sometimes really crappy. The real kicker is- this tumor? Its an effect from the radiation John received when he had Hodgkins lymphoma in 2001 when he was 18. He spent something like 6-9 months having chemo and being radiated from his chin to his abdomen. We always "knew" that a secondary cancer was possible. We never really THOUGHT it would happen. They always said it would be something like lung or bone cancer IF you got a secondary cancer. No one ever mentioned a tumor in your spine. We never thought to be aware of that. We never thought to have it checked out. I wont get into the fact that not one, but TWO Dr's missed this and that it was only found because he no longer could walk. If we had known about this a week or so earlier, when he complained about worsening numbess in his body to his dr, he might not be essentially paralyzed right now. Obviously I cant say that with 100% certainty but the man could walk when he went to that Dr appt. So what saved my husband's life 12 years ago- radiation of his lymph nodes- is now going to kill him. We dont yet know when, we dont know much of anything. I have the reports but it takes me days to get brave enough to come to terms with all of this news we keep getting. I finally was able to look @ the MRI's and see the spinal canal tumor. It took me a day to read his pathology report. I have not yet gotten the fortitude to read the operating report or MRI report from the stay at this hospital. I read the one from the ER- the people who found the tumor- the day after we got the news, after I finished sleeping for something like 9 hours in what I can only assume was my body's attempt to just NOT deal with reality. Can you blame me?? As of now- the spinal tumor is gone, we've been moved back home after 9 days in Shreveport, LA (their neursurgery team was the best to handle John's rare type of tumor, surgery wise) and John is now in an inpatient rehab facility just about a mile from our home. So far he can sit up in a chair for about 1/2 an hour, and stand with a walker and take a few side steps. Its so hard to see my big, strong husband unable to do anything with his body. He is frustrated too. Its exhausting to put on the "happy face" that I have to use 75% of the day. I'm worried how hard it will be once the kids come home tomorrow. Not the parenting part, I've got that...I just dont want to cry in front of them, worry them. Right now they mostly dont know anything except that John had surgery. John had also had surgery on his arm about 6 weeks ago that wasnt that big of a deal (well, it was a serious surgery, but it was not life threatening and he healed well) so they thing this is similar. I'm worried how they will react to seeing him tomorrow...they'll be happy, ecstatic...but maybe scared if they think he looks sick. I'm glad he will be wearing regular clothes in the rehab hospital, and not those gowns. But I'm worried they will see how little he can move (less than when they last saw him) and get scared. I'm crossing my fingers its a good visit.