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Saturday, May 10, 2014

A “simulating” experience

My apologies for a delayed update post. Traveling takes such a toll on my body and since I am already dealing with chronic nerve pain, it seems I am out-of-commission the few days following a trip to MDA.

God answered our prayers. We met with Dr. Brown and my tumor is treatable with stereotactic radiation. It will be treated this Friday, May 16 at 2:30pm. According to the MRIs, all of the other areas Dr. Brown has treated previously with stereotactic radiation looked great, including my left hip/pelvis. Praise the Lord!

The tumor is just outside of my T6 and appears to crawl from my T5 to my T7. He said it is in the paraspinal area outside the vertebral body. The reason for the crazy pain I’ve been experiencing is that the tumor is on the root of the nerve radiating from my ribs to my sternum.

He reiterated how difficult it is to treat nerve pain. There just aren’t adequate medications for it yet. He said I would probably begin experiencing relief from the nerve pain about three weeks after the radiation. So, please continue praying for God’s grace and ample pain management in that area. We haven’t found anything that works well yet and nights are especially rough on me. I struggle with pain from about midnight – 5ish am. My best sleep is normally 6am forward. It is truly so crazy when I have had a surgery and the pain in my surgery site pails in comparison to the nerve pain in my back. I do become weary. I wish I didn’t but the pain really gets to me.
I digress . . . I had my simulation following my appointment with Dr. Brown. It was quite an experience, I must admit. I feel like I know what to expect with a simulation since I have had six rounds of stereotactic radiation. I wear a sports bra and spandex capris. I have several brilliant people buzzing about me, forming a bean bag like table around my body, then aligning my spine to a million dollar machine followed by sticking my head and arms through a super-strength form of saran wrap that is then suctioned to my body by a medical vacuum cleaner hose. It normally takes 1-2 hrs and is followed up with placing tape and marker lines in the appropriate places so my torso resembles a sort of sci-fi target for the week leading up to radiation.

Well, all of this happened on Friday with a few tweaks. There were only two people performing my simulation (thank the Lord). I was in a very uncomfortable position with my hands above my head for about an hour and a half (very painful, I might add). But the real kicker was I was topless. Yes, you read correctly. As they began the simulation, the sweet physicist was lining my spine up and then paused and asked, “Are you wearing anything under your sports bra?” I don’t know about you other women, but I generally don’t wear anything else under my sports bra. I thought that was the point. I told her no and then she reluctantly told me my tumor was in a position so they would need me to remove my sports bra. At the beginning, they laid a hand towel across my chest for modesty. But when they kept lifting it up and down to check measurements and alignment, I just said, “You can just take the towel off.” I am sure I had provided enough of a peep show at that point it didn’t matter. Then, I had the privilege of having my body suctioned into a transparent sack. I know, I know. I can hear the women gasping in horror right now. There is nothing like laying stone still and letting a handsome 20ish-year-old man mark you up for radiation, including a tattoo mark in the very center of my chest. Then, he proceeded to take several digital images of me for the procedure on Friday. I had to laugh. I was like, “Seriously God, after all I have been through and now this!” It was definitely a moment I will never forget and the exciting thing is that I will get to repeat it again on Friday. Oh, when He promises sufficient grace, I know He means it . . . but then there are times like this and I wonder.

Well, enough on that mini-saga. But let’s be honest, we all need a bit of comic relief in this journey and I wanted to give you some. Since then, we have been reunited with Pop and Alexa Hope – a wonderful moment indeed. We have traveled from Dallas to Norman. And thanks to two very dear friends, we have had two in-home IV infusions of vitamins. We will have six total before heading back to MDA. The infusions are long (2 1/2-5 hrs, so you can be praying as I adjust to that). Once I start the full holistic therapy, I will do five at home IV infusions a week unless I need to travel to Tulsa for other needs.

Alright, I am going to stop for now but wanted to offer a bit of an update. God continues to move in mighty ways and reveal He is still in the healing business. I am thankful to know another tumor will see its death very soon. I am encouraged to know the tumor in my calf is gone (and my leg will be back to normal in the next several months). We continue to pray for complete and final death to all the microscopic cancer lingering in my body and we pray this new therapy will send this dirty stuff to its grave, never to return.

Prayers, as always, appreciated for endurance with the continual nerve/back pain. Love to all of my mighty warriors and happy early Mother’s Day to all of you beautiful mamas!!


  1. Praising God for the healing that is taking and will take place. Glad that there is a plan and dates/times and you are moving forward. Continuing to pray for that chronic pain and praying that the nerve pain will end even quicker than the 3 weeks predicted. Love you kels!

  2. Wishing you a Happy Mothers Day and many ~many~ more.!! Continued prayers and (((HUGS))) from McAlester

  3. Wow, Kelsey! I am praising God with you over this very wonderful news. My mother, when she was treated for breast cancer, said that there is no modesty left by the time you're done at the doctor's.

  4. Hi Kelsey,
    We're praying the radiation treatment on Friday hits the tumor everywhere it needs to be zapped and that the nerve is relieved.....and you're relieved of pain. It's an honor to pray for you, Chris, and Alexa.

    Love in Christ,

    Bill and Pam