Tuesday, January 8, 2013

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.

There are no words I can type out to express the deep, deep grief that comes with knowing that. Since the last post, all of the following have transpired- After his first stint in ICU, John went back to acute care then the rehab floor. However, he never could stand or walk again, which was a crushing blow to us. We had come back with such high hopes- as high as they could possibly be for what we were facing- that he could get treatment and be around for years and that he could gain back some mobility.

The mobility thing was struck down after that surgery. We couldnt figure out WHY, but he couldnt stand anymore. Little did we know, shortly after that John's legs went numb again. He casually mentioned it to me- with some worry in his voice- so that I mentioned to a nurse that I was very worried about it. That nurse called his Dr, who did an MRI and the next day we were told that there was, once again, cancer in John's spinal canal. I was floored.


How could there ALREADY be cancer in his spinal canal, four weeks after we were told that all but a tiny, tiny bit of the tumor was removed from that space. Only a tiny piece on a nerve root was left, in an attempt to preserve the nerve function. The neurosurgeon here called the cancer "scarily aggressive". That same neurosurgeon- who had previously refused to operate on the cancer in the spinal canal- realized we had no time to waste for a facility transfer and decided he would try and remove the tumor in the canal again. And so he did- surgery #3. He removed a tumor about 1/3 of the size of the original. He cauterized a few spots in the canal and cauterized the foramen (the opening where the nerves in your body come into the spinal canal) to try and slow down any further cancer from growing inside the canal.

Our plan was to hurry to MD Anderson. Somehow we managed to get it all set up in less than 2 weeks. All the paperwork needed- which was a huge ordeal as they needed all paperwork from St. Jude's (where John was treated for Hodgkins in 2000-2001), from LSU Shreveport, from LGMC (where he was told he had a tumor on/in his spine) and all the records from the stay @ OLOL. The only issue was they were full. We had to wait for a bed.

In the meantime, John developed ANOTHER CSF leak that had to be fixed (surgery #4), earning him another stay in ICU. His neurosurgeon and our caseworker started heavily pressing on MD Anderson to take him. He was their priority patient when they went on diversion again. That means they had no spots open for him. Finally I remember what I like to call "Death Blow Day". We had been kept in ICU even after John was better from the CSF leak and subsequent ICU stay, to keep John as MD Anderson's top priority patient- he was next in line for the next bed they had that would open up. We were told we would move by Sunday and so we prepared for that.

Then came the death blow... MD Anderson had gotten all of the paperwork they needed but had decided to convene one more tumor board, with multiple facilities, to discuss treatment for John's cancer. And what they decided was that they could do nothing about John's cancer.
It was too big.
It was too aggressive.
It was too dangerous to operate on.
There are too many nerves running into and through the tumor.
They believed there were likely tumor cells INSIDE the spinal cord that just yet had not grouped together enough to be able to be SEEN inside the spinal cord.

And just like that...our hopes were dashed. I was so angry. Crushed. How could they get our hopes up, how could they be THE center to help people, and now suddenly they decided they couldnt help my husband?? Apparently the only treatments he could have would be ones he could receive here at home, and so there was no point in going to MD Anderson.

Even the neurosurgeon @ LSU Shreveport- who had been willing to do surgery on the bigger part of the tumor- had decided during that last tumor board meeting that he also could not safely operate on the tumor outside of the canal. Far too risky, some of the nerves that are in the tumor are ones that could prevent him from breathing if cut, etc.

More things we learned as we sat in OLOL, trying to decide just what we would do...

-There is no hope for long term survival for John. While we had once hoped for a year, three years, maybe 5 years, now we would be faced with the fact that he likely will die in less than a year. They told him he should not expect to be alive by Thanksgiving of 2012.
-Chemotherapy would be bad for John. The chemo itself could kill him, it would decimate his bone marrow and immune system even worse than it would normally because he had been through this again. Chemo was not recommended and would likely have a less than 10% chance of helping. The Dr was blunt- he said "Less than 10%, but honestly I believe it has about a 0% chance of helping." So that was that- no chemo.
-The tumor was too big for cyber knife therapy. They like to see them less than 3 cm for that treatment. His is larger than 3 cm in more than one of its dimensions.
-John could have radiation or proton therapy. Neither would save his life, they would only be for means of trying to stunt the tumor growth in an effort to buy him a little time. By little, I mean months. We ended up with a wonderful radiology oncologist and she decided on radio surgery. She got his records from St. Jude's, saw how much radiation he had received there, then took the remaining amount that would be "safe" for him to have and broke it into 3 radio surgeries over the course of about 1.5 weeks.

Before I knew it, they were telling me I had to pick a hospice, I had to prepare for all of these things, they were sending him home...to die.

Then came the worst thing I've ever had to do in my life so far- tell my kids their dad had cancer and was going to die. I would have rather torn my own heart out. Sometimes when they say things now, or ask questions, I'd still rather tear out my own heart than have to deal with the reality.

He came home on December 20th- just in time for the saddest Christmas ever.

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