Friday, August 24, 2012

"Pee in this Jug" and Other Medical Updates

My Friend Mike's Abstract Photo Interpretation of Our Series of Doctor Visits
I just had follow ups with my GI specialist (Dr. Chamberlain) at St. Barbabas Hospital, and with my Internal Medicine specialist (Dr. Totaro). Both Dr. Totaro and Dr. Chamberlain ran blood work.

GI Specialist

Dr. Chamberlain said that if the Valium and Bentyl combination was controlling my intestinal spasms - just stay on them (forever if need be). I sheepishly told him that I had been supplimenting Advil for the Valium because I wanted to be able to drive, but it really didn't help the pain. Dr. Chamberlain reassured me that it was ok to drive on the Valium, and that my body would adjust.

So far so good; the drugs have kept my abdominal pain at a minimum, and being able to drive again has given me most of my independence back. I take my med combo every 6-7 hours.

Internal Medicine Specialist 

When I initially met with Dr. Totaro and explained my symptoms, including thrush  - he said, "well when I hear someone say 'thrush', I immediately think HIV. We better test for that."

Now, I didn't really think there was any real risk of me having HIV (I've only had a few long term partners); but I grew up in the 1980s and watched two friends die from AIDS in the 90s. Sadly, one of my current friends is HIV positive... living with AIDS and HIV is a lonely, painful existence since patients are forced to deal with both the relentless symptoms as well as the social stigma of the disease.

Truth be told, there is nothing medically scarier for me than HIV, and hearing Dr. Totaro suggest it as a possibility was a little like watching Jaws 6 times in a row and then going for a midnight swim in the ocean.

Luckily, the HIV test was negative.

The blood work also eliminated Systematic Lupus, Lymphoma, and Pernicious Anemia. Yet, it didn't reveal a cause for my muscle atrophy, shaking, bone pain, and weight loss (20 lbs since May). Additionally, a comparison of my labs over the course of the last two years revealed that I have become steadily and increasingly more anemic - despite having regular iron levels and a normal B12 count. There is absolutely no explanation for the anemia, nor for some of the other blood abnormalities on the reports.

Dr. Totaro wants me to see a Hematologist. His thought is that if we can figure out what is causing the blood abnormalities and unexplainable anemia, we might be able to find the cause for my other symptoms and declining health.

5-HIAA Test Results - Carcinoid Syndrome

When we realized that it wasn't the cancer causing this latest - and most pressing - health decline, I admittedly began to ignore the Carcinoid. "Why chase two illusive dragons at once?" I thought - one was enough.

Except there was the infamous 5-HIAA test - first ordered this past June - which I still had yet to complete. The 5-HIAA test is a 24 hour urine collection in a bucket:

The 5-HIAA is standard in the Carcinoid world for helping diagnose malignancy and Carcinoid syndrome. It really should have been ordered over a year ago, but that's of little consequence now.

In order to limit the chance of a false positive on the test, I had to stop Valium and avoid certain foods (plums, pineapples, bananas, eggplant, tomatoes, avocados and walnuts) both prior to and during the collection - which I did dutifully.

I just got the test results: the normal range is 0.0-14.9 .. mine was flagged "high" at 17.3. It probably is nothing serious, but I can't be irresponsible either. Dr. Woltering suggested a Carcinoid specialist on Long Island whom I'll investigate.

So What It All Means....

In my first meeting with Dr. Totaro, he summarized my medical condition perfectly; he simply said, "You're a complicated little girl aren't you."

My body is at war with itself, but no one knows why.  There are objective signs, symptoms and labs that just make no medical sense. It's one doctor after another, and when I wake up it's a question of what hurts, and how much. Not having a "name" nor diagnosis for what's doing this to me is probably the most frustrating thing of all.

In Romeo and Juliet, Mercutio described his fatal wound to his best friend this way: "Tis not so deep as a well, nor so wide as a church door, but 'tis enough, 'twill serve."

I am grateful for the health I have. I am appreciative that I can sit in this beautiful French bistro and type this blog. But the psychological toll of feeling like an unwanted stranger in your own body 'tis enough, t'will serve as one of the hardest aspects of conquering my latest medical mystery. Over this past summer especially, I have discovered that my greatest defense against this foreign, unknown enemy is the love and support of my friends and family - who are always at the ready for whatever new medical bombshells get thrown my way.

1 comment:

  1. You continue to amaze me. I'm at a loss for words as to how sad and horrible I feel that someone I care about so much has this to deal with in her life. But your strength and courage through all of this has been nothing short of inspirational. You may be one complicated little girl, but you are certainly the bravest little girl I know. Love you big fat bunches.