I thought I would take this lull (or the quiet before the next chemo storm) to backtrack on the parts of this adventure you may not be familiar with…the part before the blog. I’ll be brief because the last two blogs have been very long-winded.
January 15: by the end of the day, I was unable to take a deep breath and had searing pains in my right shoulder. Karen takes me to the hospital for what we believe is either a gall bladder malfunction or a really bad anxiety attack. (Neither Karen nor myself has a degree in medicine) No waiting in the ER waiting room because of my heart rate, oxygen levels and blood pressure. Emergency room Dr. (fondly referred to in the first blog as Dr. Assh*le) noticed my liver was enlarged, but checked my gall bladder and looked for a blood clot as well. Mental note: After the CAT scan, I become freakishly concerned that they will find something…something scary. Heather, who has arrived with Steph for levity and general eye-balling, tells me to knock it off with the bad thoughts. I start my now frequent visualization technique of boxing away bad thoughts. I evidently relate to kicking something’s, anything’s, ass. ER doctor comes back after reviewing the test results. I am not having an attack of the gall bladder, nor a blood clot. At 3 a.m. and sleep-deprived, he delivers the following statement. “You have a really large tumor on your liver and it is most likely a malignant cancer.”
“Shit. Is this really happening?”
After being admitted into the hospital, a tiny doctor with great shoes, Dr. BAH, visits me to say it could be cancer or something else. She (hematology and oncology) needs a biopsy and time to figure it out. Three days in the hospital while she figures it out. Biopsy through the ribs. Blood transfusion. Anemia. 24-hour urine test. Endless daily descriptions of my poo. Excruciating, but comic relief for my family. Good meds. I fell – we all – fell in love with nurse Brian. Thursday, a change in psyche. I mentally decide no one is going to ask me to leave “the party” early. If they do, I don’t have to go. If they try to make me, I don’t have to go quietly. Friday evening, Dr. BAH tells us she believes, and she has confirmed this, that I have a carcinoid tumor on my liver. It is probably not the primary tumor. She describes every symptom I have been experiencing over the last 8-10 months. Symptoms that no one person or doctor put together as being carcinoid syndrome. “This is a carcinoid tumor, which is a slow-growing neuro-endocrine tumor (NET). If this were another type of malignant tumor in your liver we would be having a very different conversation.”
“Shit. This is really happening.”
I am released from the hospital and well-medicated, with the understanding we will be treating this cancer in an aggressive fashion. Dr. BAH continues to do further testing to determine where the primary tumor is located. Read: Colonoscopy. Endoscopy. CAT scan. X-ray. MRI. Result: No primary tumor. “It’s been there a very long time. Years.” After two weeks she sends me to Dr. A. (surgical oncologist at MD Anderson) for further testing and resection (medical term for removal) of the tumor. Resection is the best opportunity I have to increase my lifespan with this type of chronic cancer. It will increase my lifespan significantly. It is during the time between Texas Oncology and MD Anderson that I read a book called Crazy, Sexy, Cancer Tips. Oprah says to read it and watch the documentary, so I do. I also read Beating Cancer with Nutrition. I start juicing wheatgrass and tons of other veggies. Alternative diet strategies start immediately.
More testing at MD Anderson. Referred to medical oncologist, Dr. F., after Dr. A. determines the tumor is inoperable because of the size and location in relationship to a major vein. Sidenote: WE BELIEVE “INOPERABLE” TO BE A TEMPORARY STATE. WHEN (not IF) he is able to remove the tumor, it will leave me with 45-50% of my original liver. My brother Chuck is denied permission to watch the operation, in the operating room, unless he gives Dr. A. many steaks. I decide to become the designated driver for EVERYONE from that moment on.
Dr. F is tasked with shrinking the tumor so it can be removed. Blood tests. MRI. CAT scan. Surprise barium enema. “Finding the primary tumor is critical in determining the most successful chemo plan for shrinking this tumor.” More testing. If the primary tumor is not in my liver, it continues to hide. Dr. F prescribes an octreotide hormone called Sandostatin to control symptoms and the continued growth of the tumor. PET scan. Endoscopy. Still no primary tumor, but an additional, smaller tumor is located in my lymph node next to my pancreas. “Let’s try this direction and see how the tumor responds. I’ve never prescribed this course of treatment for anyone at MD Anderson, but it is currently being tested in several other studies. ” Xeloda, Temodar….
Now you are up-to-speed. Shot of wheatgrass anyone?
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