Apr 20, 2010

Getting Reacquainted With Cancer

As you might know, I had an abnormal MRI in Feb. We are not sure exactly if there is anything wrong. I was being followed by the Army hospital in San Antonio, but had a relatively unpleasant experience when I saw a neurosurgeon about this last MRI and my confidence in their care plummeted. Care at a military facility is free, but I was willing to spend some money to get better care. Last week Holly and I were looking at the slim pickings of neurosurgeons in Austin when I discovered that the doctors at the MD Anderson Cancer Center in Houston also take my insurance. I called them up last week and was told to gather as much information for them as I could and overnight it to them. I burned a few copies of MRI CDs and some pathology and radiology reports and sent them off yesterday. I also wrote the doctor a letter that I want to share with you. For those of you that are not up to speed with my history, it is a quick overview:

April 19, 2010

FEDEX PRIORITY OVERNIGHT 793461030701

Dr. Frederick F. Lang, Jr., MD
MD Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030-4000
Attention: Wandra R 7.1651

Dear Dr. Lang,

Thank you for reviewing my case.

I am a resident of Austin, Texas. I was living in Austin when, as a US Army Reservist, I was deployed to Washington, DC in May 2004 for an unexpectedly long time. In November 2005 I began to feel involuntary jerking in my right arm. I was being treated for a back injury at the time and my primary Doctor at Bolling Air Force Base thought that it might be related to the pain medication I was taking. It was not until February 2006, when after my back treatment was complete and the jerking continued, that my doctor referred me to a Neurologist at Andrews Air Force Base. The Neurologist performed an EEG which was normal and prescribed an MRI. I went to the National Naval Medical Center (NNMC) in Bethesda, MD for my MRI in the morning and the Neurologist set me up to see a Neurosurgeon in the afternoon. The Neurosurgeon set me up for a craniotomy to be performed in several days.

My surgery was performed at NNMC on March 3, 2006. The tumor was identified by the Armed Forces Institute of Pathology (AFIP) as a grade II Ependymoma. The surgery went well with no complications other than the fact that the right side of my body was completely paralyzed. The hemi-paresis lasted ten days and NNMC transferred me to the National Rehabilitation Hospital (NRH-MedStar Health) in Washington, DC. After a little speech therapy, moderate occupational therapy and extensive physical therapy, I was able to walk again with a cane and was discharged on April 4, 2006. At that time, my right side was still very weak and the muscles from my ankle and below had not begun to move yet.

I participated in outpatient physical therapy for several more months and eventually gained limited ankle and toe movement. One month after being discharged from NRH I began radiation therapy at NNMC. I went to NNMC every day for over a month and received the fullest dosage of radiation I could get (as I understood from my Radiation Oncologist.) Also, while in DC, I suffered from three tonic-clonic seizures. All three started on my right side with my big toe; it felt like I was having a cramp in my foot with my big toe and then progressed to a full seizure. These have been controlled with anti seizure medication (Keppra 500mg AM and 500mg PM / Tegretol XR 400mg AM and 600mg PM); my last seizure was April 2007. Although my seizures have been controlled, I have always had twitching of my right foot’s big toe and also of the muscles on the left side of my right foot… consistent with the focal point of the seizures I did have. My right calf still exhibits quite of bit of muscle atrophy and my writing has never really gone back to what it used to be.

The Army insisted I stay in the beautiful Washington, DC area at Walter Reed Army Medical Center (WRAMC) to determine my disability status and after almost a year I was finally determined to be 70% disabled by the VA and the Army placed me on the Temporary and Disabled Retired List (TDRL) with 100% Army Disability. I finally returned home to Austin, TX in March 2008.

While in DC my MRIs were performed at three then four month intervals. Back in Texas, being followed by Radiation Oncology at Brooke Army Medical Center (BAMC) in San Antonio, I was only having MRIs every six months. All MRIs through July 2009 were normal showing no changes. My last MRI was taken February 2010 and the Radiologist report indicated a .7mm change in size of a mass and I was advised to follow up with another MRI in three months. I did receive a referral to a Neurosurgeon at BAMC who we did see, and he did look at the images, but he seemed more annoyed with us than anything and told us to have the other scan in three months and then come back and see him.

I was content to follow those instructions, but about three weeks after seeing the neurosurgeon, I started noticing that the twitching on my right foot was more forceful and moving for a longer period of time. The twitching has also moved up my right leg and is now present in my lower calf, upper calf behind my knee, right of my shin, above my ankle and seems to be moving to my hamstring. The twitching feels like someone is tapping my body, or feels somewhat tingly. It is a sensation I have not had before and that is what concerns me. With this new activity, I decided to only trust my life with the professionals at the MD Anderson Cancer Center.

Enclosed you will find my last four MRI radiologist reports, the pathology report from the tumor and four CD containing MRIs from 2006 through the most recent in February 2010. Please note that the two oldest CDs will not work on Windows Vista or 7, they only seem to work on Windows XP. The newer CDs will work on any Windows PC. You may contact me with any questions at --- or by email at ---.

I look forward to working with you to seek answers and solutions to this possible recurrence.

Sincerely,
Roger J. Mommaerts, Jr.
SFC, USAR, RET


I saw that the package was delivered before noon. I didn’t get a call from them today and decided to call them around 3pm but was only able to leave a message. I don’t know where we go from here. I don’t know if they will ask me to come to Houston to run tests or ask me to just have my next MRI with the Army at the end of May. I really just want to go to Houston and have them test the heck out of me to determine if there is anything wrong or not. I’m not going to say that I’m not scared because that would be a lie. I have cried a lot at work and at home in my wife’s arms thinking about all of this. But with MD Anderson as a possible solution, I feel a lot better. I try to keep my mind off things by working and spending time with Holly. There sure are a lot of I’s in this post, so I’m going to stop for now and just post it. When they call me tomorrow I will let you know what they say. Right now we just need your prayers… prayers for peace and for healing. And also please pray for my friend and co-worker Jay. We sit across from each other and both of us are going through quite a bit right now. But I think he needs more prayer than I do. He has lung cancer now which is a reoccurrence from when he had cancer in a different part of his body five years ago. So, yes… prayers for healing big time.

Thanks,
-Roger

3 comments:

Eric said...

got it...

Sarah Hansen said...

We're praying for you Roger. Thanks for sharing this letter.

Anonymous said...

You are on my mind and in our prayers Roger and Holly.

David