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...

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.

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.

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.

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.

The backstory

My husband spent most of the first quarter of the year having problems with his left arm. Eventually he was diagnosed with a pinched ulnar nerve. We decided he'd have surgery in October of this year (10/8 to be exact). The arm issue was unusual and particularly severe and he had a ulnar nerve transposition. This was a pretty major surgery, it involved cutting open the bicep to protect the ulnar nerve. We had also noticed back pain, which we attributed to the arm, for pretty much the whole year.

After the arm surgery, the back pain didnt really go away. Suddenly my husband was complaining he could not feel the muscles of his abdomen. He also was complaining of pain in his RIGHT arm. We assumed this was another pinched nerve. He began to walk a little funny. I assumed he was just trying to compensate for his arm by walking a little "off" to alleviate the pain. His neurologist marked that there were no issues with the feeling in his legs when my husband went in to complain about his abdomen being numb. This wasnt true- he was already beginning to have issues with leg weakness. That was on 10/25, I believe. Between 10/25-11/1, he fell in our home three times.

We went out trick or treating with out kids on 10/31. This was the last time my husband walked even remotely "normally".

Within two days I had convinced him that he MUST go to his neurologist on Monday, he agreed. By Saturday, he literally could not walk, I had to help him into the van and lift his legs inside. He and I spent almost 4 hours to be seen, a ridiculously long time. When we went back, we discussed his severe neck/back pain, inability to walk, etc. He told the Dr he had been diagnosed with Hodgkins in 2001 @ the age of 18. They decided to do a CT Scan and a couple of MRI's. I should note here that despite spending nearly 6 months being treated by a neurologist, and having surgery performed by an orthopedic surgeon, none of them EVER sent him for an XRAY, CT or MRI of his neck, back, or arm. Even when he went in and had a numb abdomen (clearly not a good sign). The ER dr assured me he would be in testing for quite a few hours for scans, so I went home to pack an overnight bag for my kids & drop it off with my Mother in Law. I also charged our phones, grabbed some snacks and headed back over after a couple of hours. He was still doing testing. I do remember the ER nurse coming to see me and telling me that "there were some abnormalities in one of the MRI's". I'll never know why he told me this- because he knew, and felt guilty....because he wanted me to be prepared...I just dont know. All I do remember was them bringing back my husband, and us both falling asleep for a short period of time, maybe an hour. Suddenly the ER Dr was back and said "We need to talk." My husband remarked "That doesnt sound good..." and the ER Dr replied "Its not. You have a tumor in your spinal canal. There is also a second tumor outside of the spine."

I remember putting my hands over my face and suddenly feeling like I was suffocating. The ER Dr kept talking...I dont even totally remember what he was saying. I just remember trying to breathe, feeling like I wanted to die, feeling like I would explode, feeling like I was in a nightmare that I was struggling to wake up from. I do remember him then saying "The tumor is compressing your spinal cord, that's the reason behind your paralysis. You'll have to be admitted right away. We'll send you either to Shreveport or New Orleans, because you'll need emergency surgery to take the pressure off the spinal cord before the paralysis gets worse or becomes permanent."

That is the moment I completely lost it. I became THAT woman in the ER- the one sobbing and screaming hysterically, gasping for air like a fish out of water. I remember the ER dr saying "I'll give you a minute" and walking out with the nurse. My husband called me over (he was crying as well, but silently) and I laid on his chest and wailed and wailed and wailed. I dont remember much after that except calling my mom around 4 am, and crying hysterically to her. I called my husband's mom also, who started crying on the phone. My mom was there at the ER within 20 mintes to meet me...I dont really remember what happened until she got therem which was me breaking down again. She had brought my aunt too...all my aunt could do was rub my back while my mom kept me from falling to the ground.

Knowing John's history with cancer, of course we assumed the worst- we always knew the chances he would get cancer again were higher than that of the average person. Never would I have imagined that the possible returning cancer in his spine. And as of this moment, we dont actually know the prognosis yet- benign or malignant. So far the consensus seems to be there is a good chance its benign, but that doesnt mean it is, nor does it mean no treatment even if it is benign. We simply DONT know what will happen yet. More posts on that soon. He was diagnosed in the early morning hours of 11/3/12, had risky microsurgery to remove the spinal canal tumor on 11/6/12 and here we have sat, @ LSU Shreveport ever since.

 Waiting to hear what is going on. Waiting to hear just how much our lives are going to change. Trying to find a new normal. Trying to keep our minds positive, even though its next to impossible.