Thursday, November 15, 2012

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.

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