"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.

Fashion Forward

"Fashion is not something that exists in dresses only. Fashion is in the sky, in the street, fashion has to do with ideas, the way we live, what is happening" - Coco Chanel

 

I've lost weight. Usually every woman would turn green with envy at that statement... but not when it's part of a "constellation of weird symptoms" of an unknown illness. It's been hard to be independent because of the pain, and it's even harder to drag yourself out of your apartment when literally you have nothing to wear.

Enter two of my amazing students - Cody and Sam - who were both in my 12th grade World Literature Honors course last year. Last week, they became my personal shoppers for the day. We ravaged "Forever 21" as they grabbed dozens of clothes from the racks, and then stood patiently outside the dressing room as I tried on dress, after dress, after dress. We got some good finds, and then I treated them to a post-shopping dinner at California Pizza Kitchen.

Chipotle Chicken Pizza: spicy chipotle sauce, chicken, mild chilies, mozzarella and enchilado cheese - topped with roasted corn, black bean salsa, cilantro and lime cream sauce. GENIUS!

The day made me feel "normal" again...  as my friend Joe told me, "You gotta get out in the world... you can't just feel like an ugly pair of shoes shoved in the back of the closet." Just picking out some clothes for the upcoming school year, and doling out relationship advice to my girls, made me feel more determined than ever to get well enough to return to teaching this fall.

When I was in Sloan Kettering for the week after surgery, I participated in a patient "make over" by "Look Good... Feel Better", which is an organization dedicated to helping women with cancer feel better about their physical appearance. Their philosophy is simple: a woman's self-esteem is ravaged by disease, and by helping women feel better about how they look, patients feel more hopeful in all aspects of their fight. This may at first sound vain, but there is real science behind it supporting the organization's mission. My little mall make-over did exactly that for me - made me more hopeful.

So a special thank you to my girls for not only helping me feel better about how I look, but for also helping boost my determination that I will be able to get back to doing what I love most - helping my students in their own journeys - using literature as a vehicle for self exploration.

Starting Over

My friend Mike took me for an epic bowl of seafood pasta at Biggies Clam Bar in NJ 
(My friends are making sure I keep my weight up ... Lost 15 lbs in last 2 months)

Firstly, thank you all so much for the emails and concern. I haven't been updating my blog because it seemed as if there was just too much to say...

I was in the hospital 5 times in July - four ER trips and one scheduled surgery. After the last blog, Rob (aka Batman) and I ended up going down to Robert Wood Johnson ER - and there we at least got a few answers.

As I was having a pain spike - the medical resident recognized it immediately:

"Have you ever had a charlie-horse?" The young doctor asked. (um ... I played competitive soccer so yea)

"Sure" I replied.

"Well you're having intestinal spasms - it's like a charlie-horse in your intestines" he explained.

While he was able to identify the issue he had no idea as to its cause.

He put me on Bentyl and Valium and the pain is under control. I saw a GI specialist who ordered more tests, and I see a top Internist tomorrow to try to figure out all the non-carcinoid related symptoms I've been having (pain, bruising, exhaustion, weight loss, weakness, low grade fevers, muscle spasms - I even developed thrush a couple weeks ago).

On top of all of this Gary - my partner of 5 years - and I separated, and I moved into my own studio in June. So I find myself back at the start - in all aspects if life.

I feel like an unwelcome visitor in my own body, and my new place doesn't feel like home yet - despite the heroic efforts of my amazing friends, and countless trips to IKEA.

On a positive note, my surgery (uterine polypectomy) went very well, and we are confident the biopsy will come back just fine. It's the mystery of why I'm still so sick that's the lurking ghost.

They estimate that I had Carcinoid Cancer for 5-6 years - the last year is when it broke through the appendix and was "accidentally" found during another surgery - and initially diagnosed as recurring appendicitis. I love looking at the MRI and CT reports that were done 2 weeks before they found the 3 cm tumor. Both reports say "appendix appears unremarkable". Luckily for me, my surgeon thought differently.

As Dr. Kulke (Carcinoid expert) told us - the "good news" is if my cancer has metastasized in my blood - which can't ever be ruled out - "it will eventually present itself" ie there will be more tumors.

But now there's a new unknown. How many years before this medical mystery is solved?

Carcinoid is rare, and nobody - not even doctors, really understand its true nature... But at least I had a name for what I thought was shutting my body down. Now, there's just more unanswered questions. I'm hoping tomorrow's doctor visit will bring us closer to some answers. I just need to keep moving forward.



- Posted using BlogPress from my iPhone