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
|Central Park, NYC|
It’s been a long time since I have posted. Life has sort of consumed us these past few weeks. Summertime should be a time of rest and relaxing, but we have been spinning our wheels to and from the doctors, and it seems to be a trip in futility lately. “What if a thousand sleepless nights are what it takes to know You’re near”…the words of this song ring very true in our house right now – for 7+ weeks Tim has suffered through what is now believed to be Parsonage Turner Syndrome, a rare disease that attacks the brachial plexus nerve bundles of the spine and shoulder, creating pain, numbness, and weakness and a now palsy in his left arm and severe, sharp pains in his right hand, making even the simplest tasks impossible. Physical and occupational therapy appointments flood his calendar while he juggles full time work at the Pentagon. Fortunately he has a very understanding work environment. He is seeking special equipment for keyboard and phone use to make his job easier, and there is a place within the building that will provide those. When he went to check it out the woman working there had no arms at all. He said that was a real wake up call. We are blessed.
The neighbors and our kids are pitching in to help with the work Tim normally would be doing at home during the summer. Kayaking, golf, fishing, are all out of the question for now. The prognosis is a 2-5 year recovery with varying degrees of outcomes. That is a tough pill to swallow for someone who has always been very active, NEVER sick, never had surgery or even a sniffle. So we go to the movies, browse Best Buy and Costco, eat out and try to stay busy with friends.
The little things found here and there on my recent MRIs and Pet Scans now pale in comparison, and while I am seeking to get to the bottom of a nearly year-long pain on my right side, it is not debilitating and I will get answers when it is time. For now, I am waiting to hear from my ob/gyn as to her thoughts on recent test results. I leave on Wednesday with Kelli for Pittsburgh for her American Idol audition, which we are all very excited about! She leaves for college in just 6 weeks, a very exciting but sad day in our household, well, at least for me and Tim who are about to become Empty Nesters! I hope you’ll enjoy the song below and remember, as we are, that God’s ways are not our ways, but His love is deep. We covet your prayers.
This has been a very eventful week in our family. Kelli, our youngest graduated Summa Cum Laude from high school, so now we are officially “Empty Nesters” once she leaves for college in 2 months. We’ve also had a lot of visits with Tim to doctors and E.R.’s for his
3-week-long shoulder/neck problems, which MRI finally revealed to be a herniated disc and subsequent pinched nerve and mobility problems with his left arm. He is due to see a spinal surgeon this week at Bethesda Naval Medical Center in Maryland. Father’s Day is next weekend, but currently, golf, tennis and kayaking (3 of his favorite activities) are out of the question! I will keep you posted as to what happens next on Tim’s medical front. Please pray for Tim.
Apparently I am! That’s what the dermatologist called to tell me today. The mole removed from my abdomen last week was determined to be Atypia, in other words, “pre-cancerous”, but the margins were clear. He wants me to be checked again in 4 months, 8 months, 12 months, then every year. (Thanks to my maternal grandmother and paternal grandfather, both of whom had numerous skin cancer lesions). The mole itself was only the size of a small pearl, but quite dark. Now I am left with what is sure to be a nasty scar, about the size of a large pea, but seeing as I have no intentions of wearing a bikini anytime soon, it is well hidden! If you really must see it, click here.
I have an appointment with my oncologist next week since the pain on my right rib cage area has not improved in almost a year and I have had continued bouts of tender swelling in my groin on that side for over a year as well. I have numerous sharp, tender “jabs” under my rib cage and towards my back each and every day. At times it is a take-your-breath-away pain, but it is brief and so I deal with it. I’ve almost become accustom to it, so much so that I have stopped all pain medications because they make me too loopy and I guess I would say that the jabs are tolerable (as much as one can stand being “slugged” in their side every day)! I’ll wait to see what tricks Dr. G may have yet left in his bag. I’m imagining the standard blood work, another scan, and another, “we can’t find anything” result but it is what cancer survivors do. It is the drill for at least 5 years, and sometimes beyond. As much as I would like to let it go, and decide once and for all that this is nothing to worry about, the fact is that I do worry and I feel very strongly that it is not normal. Fortunately for me, neither does my doctor, and he is on a mission to find it.
Summer is officially underway and next week at this time we will be graduating our last high schooler and attending college orientation soon. This same daughter plans on auditioning for American Idol in Pittsburgh later this summer as well. She can only take one parent with her. We’ll be fighting over that assignment!