Friday was a very crazy day, I had been up since 2am trying to control the pain and anxiety with little relief. While I was getting ready to go in for the Thoracic and Head MRIs, the nurse of a Rad Onc at Mayo called and asked me to rush in because the Rad Onc wanted a consult before the MRI, which had been changed to a Head, cervical, thoracic and lumbar MRI all at once. I guess she could tell I was really frazzled. She asked how I was holding up, I told her I was in a lot of pain and worried about laying down for a long MRI(3-4hrs), she said "yep we need you in ASAP, Doc will get you some meds but hurry". So we rush in, I really liked him. He said the main concern was that T10-11, the one causing the most pain, they were afraid it is in the direct radiation field from my lung Cyberknife. If so, I would need surgery to debulk and rebuild that vertabrae. So while I was in the MRI he was going to call my Baptist Rad Onc, a nuerosurgeon at Mayo and my Mayo Onc. Also they couldn't wait until Monday for the Lumbar and Head MRI so I was in for a lumbar, thoracic, cervical and head MRI. A three hour minimum MRI, he offered to postpone the MRI until Monday when they had my pain under control, I said absolutely not and that I would be in the phych Ward if we waited that long, I was going to at least attempt the MRI. He asked what Meds I had taken so far, an hour earlier I had taken 4mg dilaudid and 1mg Ativan, at 2am when I woke up in pain I doubled back up on my fentynal patch, but that hadn't had time to kick in yet so technically I was only on 25mcg of fentynal. He was shocked that I was functioning and coherent on 4mg dialuded and 1mg Ativan And he told me to take 2 more diaudid and 1 ativan. Went straight for the MRI, by the time they got me onto the table I was very loopy.
I did pretty good, only needing to stop once because I was so hot that sweat was running down my face. So they pulled me out for 5 min to cool off, wipe my face down and take all the blankets off of me. Between the meds and the noise I kind of felt like I was in a trance, not really sleeping but not obsessing or freaking out.
After my MRI's I went back down to the Mayo Rad Onc for the results. I was given an IV dose of Decadron 10mg and Protonix 40mg. And within 10 or so min the MRI results were up. Its not pretty.
Partial collapse of C7 vertabral body w/ 30-40% reduction in vertabral body height centrally, enhancing marrow infiltrating disease throughout C7 w/ evidence of epidural disease in the prevertable soft tissue and ventral epidural space. The ventral epidural tumor is more pronounced on the left side and extends into the C7-T1 left Neural Foraman. Mild flattening of the left ventral cord surface @ the C7 level epidural tumor.
Marrow infiltrating neoplasm involving the majority of T10 w/ extension of the tumor into the ventralepidural space, mostly on the left, into the left T10-T11 neural foramen, and into left paraspinal soft tissues. The epidural tumor causes mild compression of the left anterior aspect of the spinal cord at the T10 level.
Large marrow infiltrating lesions involving L2 & L4. No evidence of Lumbar epidural tymor. Small amount of ventral epidural tumor in the Sacral canal at S3 level.
These are the ones they are most concerned about and after radiation we are considering some sort of surgery with a bone cement? to fill in the collapsed parts of the vertabraes.
If all that wasn't bad enough... Small round marrow infiltrating lesions in T2, 4, 9 and 11 consistant with other met vertabral lesions. evidence of small bone islands versus sclerotic mets in T1 and T5 vertabral bodies. Minimal disc bulging in many upper and mid thoracic discs. Small marrow infiltrating lesions in L1, 3, 5, S1 and S3. Enhancing expansile lesion involving right L3 pedicle, transverse process, superiorarticular process and lamina.
A total of 18 vertabrae affected!!! That is scary crazy! On another thread I started a while ago titled "don't Tell Me", that was partially because everyone(family wise except my hubby) kept brushing me off, thinking my pain was all in my head or I was being too paranoid. For some reason saying "I told you so" just doesn't make me feel any better right now
It was then decided it would be more expedient and accurate to go back to my Baptist Rad Onc for radiation. The radiation field was too close to my cyberknife area and the fear was that my spinal cord would get fried. So I we rushed there for my simulation, then they let me take about an hour nap and once they had worked through all the other patients came back for me. Did the first of 10 treatments, on T10-11 and C7. I was working with my Rad Onc's assoc(Dr O), mine (Dr. S) is out of town until tues. These are the worst of the vertabraes, but L2 and L4 are pretty close behind, not causing as much pain. Dr O said that Dr S might modify the plan to include L2 and L3 on Tues.
So on the way home I recieved phone calls for appts with the Nuerosurgeon on Monday. I needed to go buy a cheap neck brace for the weekend(UGH!) and Monday morning go get fitted for real brace, hopefully it will be more comfortable and breatheable. This is to give more support to my neck muscles and help prevent C7 from fully collapsing. I can already tell a differance in pain level as long as I wear this cheapo brace.
The scariest part of all this is that 7 weeks ago a Pet scan showed possible METS to C7 and L1. The next week I went into the ER with severe back pain. They did a cervical and Lumbar MRI 6 weeks ago(from tomorrow) in the ER to see if that what was causing the pain, The MRI showed both areas were negative for cancer. Dr. O said the first thing he thought of was the MRI was misread, so he went and looked at the pics and he said there was no sign of any malignancy on the MRI. So either the MRI was not done properly or cancer spread like wildfire through my back. Very little mention of the rest of my organs has been made so I am thinking everything else is somewhat stable. The MRI did mention some Lymph nodes, but only a few new ones. I am kicking myself because Dr O. was insisting on doing radiation on C7 and I refused. Could or would that have stopped the spread to the rest of my back? Who knows... The most surprising thing to me was all this spread to my back and the existing tumors in my lungs, liver and lymph nodes and not one mention of stopping treatment or hospice. I don't know why but that really shocks me, not that I am ready to give up or anywhere near but it just surprises me. It is scary to think of how close I was/am to becoming paralized.
Tuesday morning on my way to have the CT scan done that tipped us off to all this, I was at a complete stop with Lilli in the back seat. A car behind me came to a screaching halt, I flinched thinking we were about to be hit. When I looked back this small SUV had came to a screaching halt completely sideways about a foot from the back of my car. At the time I was just freaked out thinking Lilli would have been crushed, but that car would have probably crushed my back into pieces. Its very scary to think of what could have happened to us.
So I think that is everything, I will add on if I think of anything else. I better send this as Lilli is climbing on me and I am afraid she will erase this long post. I am doing OK, we have this week arranged so I won't be home alone, working on what to do for next week.