A Message To You From Home

Relief....I am home. Sorry it's taken a couple days for me to reach all of you, but I hope you can have some understanding of the impact of the words..."I'm home." I haven't slept in my bed next to my loving husband since the 19th of January. I haven't seen my amazing children since the 29th of January. We certainly had some catching up to do.

To be fully open and honest....I hesitated sharing too much about my medical condition with all of you. I know that many of my friends and family are in the health care profession. I had so many DR. theories about what was happening to me and I was worried that many of you would "Stew" over what was happening. I didn't want that stress for you. It was enough for me and my family to deal with. I will share with you now, the most puzzling issue that I have been facing since all of this started was the loss of proprioception in my lower extremities which progressed to pretty severe clonus and hyper-reflexive muscle response. I have been dealing with pretty severe tremoring in my legs and some difficulty with my left arm. The left arm and leg being worse than my right. This was one of the primary reasons for going to inpatient rehab. I had such difficulty walking...fighting my muscles on a daily basis. So, the BIG question is WHY? And, what does that have to do with my ear/skull surgery and my pulmonary embolisms? The day before I was scheduled to leave rehab, the now 6th or 7th neurologist that came to evaluate me (over the course of my 22 day hospitalization) decided to do a spinal MRI. I had only previously had one of the brain. The result Thursday evening was, "You have a mass, a tumor, at C3/C4 to the left of your spinal cord that is causing compression. We believe this is the source of the problem." I thought.....Are you telling me, that I went in for an ear/skull surgery, a week later I'm struggling to breathe and having difficulty walking, develop life threatening pulmonary embolisms, through the course of recovery have further deterioration of my proprioceptive and motor functioning, and now I have a cervical tumor??? This is unbelievable! And yet, surprisingly, maybe an answer! Or, was it??? Neurology says, "It is causing your problem and needs to come out." Neurosurgery was not 100% convinced. Neurosurgery agreed that if compressing enough, the tumor is in the exact location to cause the exact symptoms I am suffering from. However, they are not convinced that the tumor is pressing hard enough to cause the severity of the symptoms I am experiencing. AGH! They ordered another brain MRI looking more closely at the brain stem. It was normal. They then wanted to begin testing for the "Bad/Rare Neurological Conditions" that could be the cause of my trouble. That's when I said, "ENOUGH! I'M GOING HOME TODAY! I NEED TIME TO PROCESS ALL OF THIS. I NEED A BREAK FROM ALL OF THIS. IN MY HEART AND MIND, I DO NOT FEEL I HAVE SOME SEVERE NEUROLOGICAL CONDITION. I'M SICK OF TESTING. I'M SICK OF THEORIES. AND I NEED A BREAK!" So, with the blessing of most, I went home.

In terms of the tumor, what everyone did agree with, was that it can't come out right now. I would have to be off blood thinners for at least 2 weeks. The risk that would pose to my lungs due to the severity of my clots and how recently I have just started treatment would be far too great. Neurology and neurosurgery want to monitor it closely and wait for the right time.

My theory (and it's just a theory). I feel it would be way to ironic for them to find a spinal tumor in the exact location that would cause me these symptoms. I question (as well as one of the neurosurgery residents) that during this process, this ugly tumor may have compressed my spinal cord (i.e. during intubation and/or positioning, etc.) that may have resulted in these symptoms I am experiencing. And, through time and therapy, may have shifted off. There is compression, just not enough right now to fully impede CSF flow. That seems much more possible to me than finding some very rare and complicated neurological problem.

My plan....I will be following up closely with neurosurgery. In the least, I will have a repeat spinal MRI in a couple weeks and follow-up shortly after. I am told these are usually slow growing tumors and typically 90% benign. There is some concern that with no prior symptoms or pain, this may be a faster growing tumor. So, we'll watch it closely.

The other thing I don't think I've shared with you is the other prevailing theory regarding the development of the PE's in my lungs. The Dr's spent a solid week discussing and searching for cancer. They tell me that new onset cancers can put your body in a hypercoagulable state making you more susceptible to pulmonary embolisms. After multiple scan's and studies of my abdomen/pelvis, etc. they found nothing. Until now this spinal tumor. So, is this tumor an isolated event/finding.....or could this be the link to my PE's? Does everyone see how complicated, how scary, how difficult, and how incredibly frustrating this process has become???

This is why I needed to come home. This is why I needed a break. This is why I am so very thankful to have all of you. Between myself and my faith, my family and all of you, I have had the fuel, the fire, and the sheer determination and strength to fight all of this. I know that I still have many unanswered questions and certainly this is not over.

I do not know if the tremors are better or if I'm just learning how to live with them. I want to believe they are getting better because I can do so much more. I do not think I'm getting worse. I am able to walk with a cane and do the majority of my own care. I do tire easily. I will be going to outpatient PT 3x/week....piggy backing with my father during his cardiac rehab. Can you believe that?!?! I am off oxygen. My HR still continues to run a little high and my chest gets heavy and tight. It improves when I rest and take breaks. I'll have blood draws 3x/week which should decrease in frequency as my therapeutic level on coumadin becomes more consistent. In the next couple weeks I have follow-up with my family physician, neurosurgery, neurology, pulmonology, GI, hematology, and of course my ear/skull surgeons. It will be a busy couple weeks and one that I expect will bring great progress.

I know this was a long post. I was holding quite a lot back and felt it was time to share. I love you all and am so very thankful for your love and support!
Kel