• Waldenström Macroglobulinemia
  • Melanoma
  • Bladder Cancer
  • Brain Cancer
  • Breast Cancer
  • Childhood Cancers
  • Gastric Cancer
  • Gynecologic Cancer
  • Head & Neck Cancer
  • Immunotherapy
  • Kidney Cancer
  • Leukemia
  • Liver Cancer
  • Lung Cancer
  • Lymphoma Cancer
  • Mesothelioma
  • MPN
  • MDS
  • Myeloma
  • Prostate Cancer
  • Rare Cancers
  • Sarcoma
  • Skin Cancer
  • Testicular Cancer
  • Thyroid Cancer

How Gastrointestinal Stromal Tumor (GIST) and I Became Acquainted


Twenty strokes signaled that there was trouble, though no one would have suspected a tumor.

It was a typical Monday morning meeting in my boss' office — a real neck-snapper. Therefore, when I got up to return to my desk, it was not surprising that my left leg and foot had no feeling. What limbs would be able to remain awake under such circumstances?

It took longer than normal to revive my foot, as I marched around my desk, waiting for the ginger ale-like feeling that comes when sensation returns. Though there wasn't any of that, normal feeling came back and I returned to work.

On Tuesday, all was normal, so I didn't give the incident any more thought until Wednesday. While working from home and typing away at my desk, I noticed that my left foot and leg were again missing, in terms of sensation. My legs were crossed, so I imagined that I had cut off circulation yet again, and felt no genuine concern. It happened several more times, which prompted me to get up, head for my bedroom and stretch my legs out on the bed while sitting upright. Doing so seemed to restore functionality in about ten minutes.

Satisfied by that scenario, I pushed all worries aside. But on Thursday morning, it happened several more times, and once, when I rose to head for the bedroom, my head swam in the most alarming and unusual way, with extreme dizziness and feelings I had never experienced before. That raised enough of a red flag to prompt me to call my local primary care physician's office. I secured an appointment for the afternoon.

When I appeared before my doctor's husband, a DO whom I had not met before, he became very agitated by the fact that my blood pressure was 212/102 and said I had to go to the Emergency Department (ED) immediately, because he was afraid I was going to have a stroke. Looking at his quivering face, I was afraid that he was the one headed for a stroke, but I dutifully set off and drove myself to the hospital, which was about a half hour away by car. I was terrified and shaken, and arrived expecting to be recognized (he had promised to call ahead and fill them in) and taken right in. Instead, the ED admitting nurse asked me to take a seat and fill out some forms. I suggested that we forgo the paperwork and explained why. She ushered me right in.

I was given nitroglycerin to control my blood pressure, rushed into the first of many CTs, then returned to the patient bay in the ED to await further processing. The ED's on-call doctor did a thorough examination, stopping to comment on a mass he detected in my abdominal area, which he asked his assistant to confirm. She felt it, too. This finding resulted in another CT, one of 11 I would have over a 27-day period. They also sent me for my first MRI, which was quite challenging because of my migraine headache and claustrophia.

Based on their findings, a joint decision was made to admit me, analyze the CT and MRI results, and then determine the next course of action.

In the morning, a team appeared and surrounded my bed. The lead doctor said that I had a palpable mass in my abdomen and should be moved to Maine Medical Center in Portland, where they had surgeons on staff who were better equipped to help me. The complexity of my case stemmed from the fact that I had already had twenty strokes by that time, and now I had a palpable mass. It was a real head-scratcher for the entire team; they were wise to move me to a larger facility.

An ambulance was arranged and I went for a one-hour ride on Friday morning, to the massive Maine Medical Center ...

This is the first part of my story. Please continue to follow along here:


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