It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.
One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying my body’s ability to produce mechanisms for absorbing nutrients. He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population. Needless to say, I think we are on to something! Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!
We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from. While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon. In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.
Maybe it’s just the dog days of summer, or 100* temps in July, but my fatigue continues and causes me to feel like taking a nap every day after just being awake a few hours. This is after a full 8-9 solid hours of sleep at night. More likely, it is my B-12 deficiency, a form of anemia. It is a “tired” unlike even chasing the 4 kids under age 5 that I had under foot may years ago! I can only describe it as a close 2nd to the fatigue I had during chemo….like the blood has been drained from my body. Yeah, like that. Where’s that pillow? I have closed my business for the next couple of weeks while I try catching up on outstanding orders and work on things around the house that have gotten behind.
My oncologist called last week to say that although my B-12 numbers are climbing in the right direction, they are not what they should be (at only about half the normal level) and he wants me to be re-tested in 5 weeks. I am continuing the daily Rx strength B-12 supplements. I’m hoping we can get to full levels in that time and start to feel more energetic again. August has me scheduled for a pelvic ultrasound, a mammogram and a dermatology follow up. Are we having fun yet?
Last weekend we went up to New York City to take Keith and Kelli to Broadway show, starring our long time family friend and 2011 Tony Award winner, Norbert Butz, in Catch Me If You Can. (Click on the photo, then the little arrows to the right and scroll through the rest of the photos.) What a thrill! We surprised the kids by arranging to meet Norb backstage after the show. He was so gracious to take the time to talk to Kelli about her musical interests, and she was star struck, also meeting the other lead, Aaron Tviet when she asked him to take our picture (not realizing it was HIM!)
Monday morning found us back at Walter Reed meeting with the rehab doctors for Tim’s condition. He continues to battle through the paralysis (left side) and numbness, nerve pain and limited mobility on right side. He will be seeking a 2nd opinion from a renown spinal nerve doctor at University of Virginia in the coming weeks.
Fortunately we have the boys home from college for another couple of weeks to do things around the yard and house. After August 23rd we will officially be empty nesters! We plan to try squeezing in a family beach trip in a couple of weeks and enjoy some rest on the sands in Maryland’s shores. “Til then! ~ Koryn