Tuesday, September 27, 2022

GIST This!

As of yesterday morning, it had been one week since my endoscopic ultrasound and biopsies, but I still had not received my pathology results. The doctor told me it would take three weeks, but other people said that was ridiculous. They claimed biopsy results should take five to six days.

As the doctor was so dire about the need for this tumor to be removed, whether it was benign or malignant, I thought I would get ahead of the game and start lining up a first and second opinion now. I lined up an appointment at Dana Farber Cancer Institute in Boston fairly quickly. Memorial Sloan Kettering Cancer Center in New York City was not as easy. There, I was told that no appointment would be made until they had the pathology report. (Dana Farber has direct access to my local records and, therefore, had the report already -- even though I, the patient, was not given any access.)

Imagine my surprise when Sloan called yesterday to schedule an appointment for me. When I told the scheduler that I did not yet have the pathology report, she replied: "We do." My heart sank. Is this how I'm learning that my tumor is malignant -- through a third party? I didn't ask her to tell me the results. I was so upset, and I was nearly certain that she was not "authorized" to tell me.

About two hours later, the local doctor who conducted the ultrasound and performed the biopsies called me. To my surprise, he told me that the GIST is BENIGN, as is the enlarged lymph node! Praise be to God. Then, despite his dire warning a week earlier that this tumor absolutely has to be removed, he told me that, due to its size, it need only be watched -- just like my former coworker's lung nodules. I thanked him for getting my retirement off to a good start rather than the bad start I had feared. 

Despite the good news, I have been blocked from accessing MY own pathology report. Nevertheless, I'm keeping my appointment at Sloan, as these types of tumors can be complicated, and they have so many variants, and putting my Dana Farber appointment on hold. As for my life, it's 



Wednesday, September 21, 2022

The GIST Of The Matter

 In 2010, I was diagnosed with breast cancer, had a massive surgery, followed by lots of complications. I took a little pill for the next ten years, and all was well. Twelve years later, it looks like it may now be my stomach's turn.

Last Wednesday, I had a routine colonoscopy and endoscopy. I was a bit concerned about what the colonoscopy might find, for reasons I will not go into. Imagine my surprise when I woke up to learn that I don't need another colonoscopy until 2032, but a nodule had been found in the submucosa of my stomach. Submucosa is below the surface of the stomach lining, which is called the mucosa.

As I listened to my GI doctor's verbal report, in my post-anesthesia fog, I distinctly heard him say that I would need to undergo an endoscopic ultrasound of my stomach but that it could wait until I was settled in on the Cape. OK. I remembered a former coworker of mine had some nodules in one of her lungs many years ago, and all she had to do was have them looked at every six months for a year of so, and that was that. She's fine. So, I was wheeled down to the exit of the hospital where Jim was waiting for me, and off we went to Ponzio's for a very late breakfast. All was well. Until the next morning.

On my way to work last Thursday morning, my doctor's office called. I was told that my doctor said I needed to have the endoscopic ultrasound now. It was scheduled for this past Monday, the day of the Queen's funeral. I had to arrive at the hospital at 9:45. Now, this was excellent news, as it meant that I would be able to watch the Queen's funeral and the London procession before we had to be on our way, which I did. Thank you, nodule!

A different doctor performed the ultrasound, but, like before, he delivered his findings to me while I was in the recovery room in a post-anesthesia fog. He said the 6 mm nodule is a 14 mm stromal tumor. I remember asking him to repeat the name of the tumor. He said stromal again and spelled it. That's the only reason my brain was able to remember that term. He also found an enlarged lymph node. He needle biopsied both and told me the pathology report would take about three weeks. Nice. 

The doctor said that the tumor has to be surgically removed. I think he said soon. I told him I'm moving to Cape Cod on September 30th. He said, with a tone of knowing parental concern, "oh, you're not having this surgery done on Cape Cod." Hmmmm. Then he said something about five days, which I think was the time I'd spend in the hospital after the surgery, which seems impossible in this day and age, followed by something about my GI doctor's office calling me or my calling the office. He concluded: "It's a good thing we found this now, or this would have been a real mess." I was given an envelope with his report inside and wheeled down to the lobby where I met Jim. I was on clear liquids for the rest of the day, so no Ponzio's this time, but Jim had recorded more of the Queen while we were at the hospital, so I was able to see the Windsor procession and the committal service in St. George's Chapel. (He said that, when they lowered the Queen's coffin beneath the floor of the chapel, he couldn't help but think of the Wicked Witch of the West melting. Don't put those optics in my head with my dear Queen!)

Of course, as soon as I got home, I went straight to the Google and looked up stromal tumor, and there it was: GIST. Gastrointestinal stromal tumor. A rare cancer that starts in the digestive tract. Some GISTs do turn out to be benign, but they will become cancerous, which is why they must be surgically removed. Another site informed me that there are exactly SEVEN hospitals in the country where doctors have the most experience "with a rare sarcoma with a wide variability in characteristics and behavior" are located. One hospital is Fox Chase Cancer Center in Philadelphia, where my breast cancer was treated. The other -- PRAISE THE LORD -- is Dana Farber Cancer Institute in Boston, Massachusetts. Can I get a witness? Hallelujah! Yesterday, I began the process of scheduling a surgical consult at both places, and I made the decision to stop reading about something that is much, much more scary to me than breast cancer. I had heard of breast cancer. I understood breast cancer. My mom died from breast cancer. I had it. My sister had it. But GIST? Get away from me.

I'll end this with a rant. Covid freakin' Schmovid. If a hospital won't let a patient's loved one anywhere near the procedure area, why can't these doctors find a way to communicate with the patient's loved one about the procedure? How can they seriously expect someone who has just come out of anesthesia to fully absorb and understand what they are reporting? Much of what the doctor said to me was not in that report, so, had I not been somewhat lucid, God knows what I would have failed to retain. 

Actually, I'm not ending this with a rant. I'm ending this with gratitude that my little GIST was found before I began having symptoms, that Dana Farber is experienced with this type of cancer, and that, once again, I will have my darling Jim, a/k/a The Sainted One a/k/a TSO, to see me through what I'm sure will not be much more fun than my breast cancer journey.

Oh, wait. One more thing. At my most recent appointment with my oncologist at Fox Chase, she transferred me to the "Survivor Clinic" for my future follow up appointments. L. O. L.

Thursday, September 8, 2022

Here Comes The Sun

Outliving the Queen

As we begin to navigate the budding Carolean era of King Charles III, I am not the first person to observe that, prior to his reign, when th...