Latest Update

My recent trip to Florida is now just a fond memory. After the marathon in Disney, Ray and I ventured to Clearwater, Tampa (to visit my brother), St. Pete's Beach, Punta Gordo, and then to the Florida Keys. The weather was cool for almost all of January, but greatly improved once February rolled around and we arrived in the Keys. Our month was filled with boating, beaching, kayacking, and biking. It was wonderful to be where it was warm and sunny.

I did have a little incident though a couple of days before we left the Keys. Here is what happened: I had a brief episode (3-5 minutes) where I didn’t know where I was or even where I got the clothes I had on. I contacted my oncologist immediately thinking perhaps I was having an allergic reaction to the oral chemo that I am still taking. Dr. Carraway did not believe that the incident had anything to do with my chemo, but said I must be deligent with my aspirin regiment and if it happened again I should go immediately to the ER. She said she thought I might have had a TIA (aka – a mini stroke). Thankfully, nothing else has happened since.

The day we arrived back in Baltimore (March 4th) I went directly to see my cardiologist. He did an EKG and listened for atrial-fib (irregular heartbeat/rapid heartbeat) thinking that might be the culprit. When your heart beats erratically sometimes it sends off little blood clots. The EKG showed nothing and I was not in a-fib when I was in his office. My blood pressure was perfect, and my blood work (white count, red count, platelets) was perfect except for an elevated MCV and MCH which indicates that I have a B-12 deficiency. He didn’t pick up on it, but my daughter, Stephanie did when I went to her office on Tuesday with the results in hand. The cardiologist talked about the possibility of putting me on a heart monitor, but his feeling is that my heart had nothing to do with the episode. I’m proud to say that my cholesterol was only 137! Not bad for an old broad!

Tuesday I went to my daughter's office - she is a neurologist. She did some basic in-office testing (off the record) to test for balance, reflexes, dexterity, etc. She found some mild dysmetria in my left hand, which in itself doesn't really mean much, but coupled with the memory loss incident it might. She also determined that I have neuropathy in my legs that effects my nerve endings. I was diagnosed some 15 years ago so this is not new. My legs have been bothering me lately so perhaps this is related to the B-12 issue – I’m not sure. When Stephanie noticed the elevated MCV and MCH levels she made me promise to tell my oncologist. I did.

Thursday I went to Hopkins to see Dr. Rivero (my regular oncologist is on maternity leave) for my regular visit and bone marrow biopsy. The BMB was very uncomfortable. For some reason they couldn’t get deep enough this time. I am still sore. My blood counts all look good except I have another urinary tract infection. Dr. Rivero gave me a prescription for that, but also took an additional urine test to determine if there is some kind of different bacteria at play in the urinary tract since these infections are becoming chronic. I also had to have an additional blood test done to re-check my B-12 levels. Dr. Rivero is very concerned about that. Apparently B-12 deficiencies are common among Bone Marrow Transplant patients. It can cause depression, anemia, memory loss, fatigue, etc. I have been complaining since my transplant about cognition (or lack of) and have always blamed it on my “chemo brain”, (and perhaps it was in the beginning), but now I’m learning that memory loss and an inability to retain information can also be related to a B-12 deficiency. Interesting, don’t ya think? By the way, my BMB showed no leukemia cells present! Yeah!

I have had an echo-cardiogram (everything looked good there), and next week I get an electroencephalogram (asleep and awake) – where they will measure my brain waves. Saturday I had an MRI with and without contrast. I am awaiting the results.

So that's where we are. A lot of open ends right now, but I am sure the mystery will soon be solved. All of these tests are instrumental in figuring out what my “episode” was all about. They have to do all these tests to rule out blockages, blood clots, etc. While a B-12 deficiency explains a lot, it doesn't necessarily explain why I had the episode in Florida. I have been referred to a neurologist, someone other than my daughter who doesn't want to take the risk that she might "kill her mother". Hopefully, it will all come together in a few days. I go back to see Dr. Rivero on the 24th but he will call me with test results as he gets them. That all being said, I feel absolutely fine except I am very tired.