Timeline

For my future reference, what follows is the timeline regarding
my diagnosis and treatment for Myoepithelial Carcinoma
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On 25 Jan. 2019, during a yearly physical in Nevada, I mentioned it felt like I had a sea serpent in my belly. Ok, it was a wild exaggeration, but in the US most doctor's attention span is controlled by insurance companies, not people's concerns. My old doctor spent about five minutes per patient. After the allotted time, if I had a question, I had to physically plant myself in front of the door to block his exit. This was a new doctor so I wasn't sure she'd listen but she did and was very gracious about it.

Yes, gracious as in "pleasantly kind, benevolent, courteous". Dr. Nguyen was seven when she came to America from Vietnam. "We were boat people", she said in an interview for Carson Now. Her father was a doctor but, with the fall of Saigon, her parents had to leave the maternity hospital behind they'd opened together and were able to do so because of the sponsorship of a gracious church in Michigan.

Anyway, Dr. Nguyen scheduled an ultrasound for Feb. 15. I got the results on Feb. 27. They indicated a mass on my kidney so she scheduled further tests. On the 7th of March I had a second ultrasound followed by a CT scan with dye. Those tests clearly showed an 8 cm mass on my kidney. I met with a Nevada urologist on March 18. He wanted to do a biopsy.

However, at the same time, we were nearly done sorting through, tossing, donating, giving away or selling most of our possessions, selling our house, and relocating near family and friends in Oregon. Furthermore, we had plans brewing well over a year to move to Europe part time. We had to go.

The Nevada doctor gave me a referral to one in Oregon. I met with him on 8 April. Our flight to London was on 14 April. He tried to schedule the procedure before that but couldn't until 17 April. M. Lee and I decided he should still leave as planned. The plane fare and lodging was already paid. I had the biopsy on 17 April and two days later left for Europe.

I was told I'd get the results in five to seven days. After a week, I called them but they could tell me nothing. Another week went by but still no word so I called again. The receptionist didn't know anything and seemed irritated by my question. A third week passed and still no report—so I called again. This time she said the Oregon lab couldn't identify the mass and sent it to a lab in Indiana which hadn't finished their analysis yet. On 9 May, the Oregon doctor called me in Portugal with results, myoepithelial carcinoma, a very rare form of cancer generally occurring in a salivary gland. We discussed me returning to the US for surgery as it is currently the only known treatment for this form of cancer.

On 10 May, as we were in Portugal, M. Lee emailed the Champalimaud Center for the Unknown, a private biomedical research foundation here in Lisbon. They immediately assigned us a personal representative we could contact at anytime and made an appointment with Dr. Miguel Almeida for 13 May. On that day, Dr. Almeida scheduled five tests, all completed the following week.

Not wanting to do a second biopsy, Dr. Almeida wanted the slides from Indiana. In Europe your body parts belong to you. You want them, no problem. In America, no. I called the lab several times, signed and sent various requests to no avail. Even Dr. Almeida personally called and spoke to the head of the lab and sent signed forms requesting samples. By the time he finally received the biopsy we had returned to the US to apply for a Portuguese visa.

The process of applying for Portuguese citizenship is many stages, very backed up, and incredibly tedious. We had an appointment in San Francisco on 10 June. It required delivering a massive amount of paperwork, including an FBI background check, Portuguese tax number, bank account, and residence address in person. We had to go.



July 1 we returned to Portugal. While we were gone, Dr. Almeida put together a "dream team" including Dr. Christophe Assenmacher who flew in from Brussels. The surgery was 12 July and was done using Champalimaud's da Vinci robot which the surgeon controls from a console. This is a minimally invasive form of surgery, capable of greater accuracy and, if all goes well, reduces recovery time. The da Vinci made six small incisions in my abdomen for its "hands". One held the kidney while another carefully cut off the infected part and, before removing it from my body, still others slipped the tumor into a plastic bag, sealed and compressed it and yet another hand pulled the bag out through the largest incision which was about an inch and a half or some 4 cm long. They also removed a second tumor from the back of my neck which appeared last year. I remained in ICU for three days as bleeding can be a problem. It wasn't. I was discharged on the fourth day and have been feeling fine.

Oct. 8 I had a follow up CT scan of my entire body and tomorrow, Oct. 24, I will find out if I am, at this time, cancer free or not.

Oct 24 met with Dr. Almeida. The CT scan did not detect any cancer at this time. I didn't get elated when he told me. I felt grateful and have had moments of well-being and belonging, rare anytime for me and very welcome.