Part 1 - Discovery to Diagnosis
(from CaringBridge 2018)
My General Practitioner, Dr. Sobel, worked through my annual physical. We saw I was due for a colonoscopy and the referral to Dr. Mahoney was made in April. At the preliminary appointment, several upper G.I. questions led us to decide I should also have an endoscopy at the same time -- to look into my throat and stomach for G.E.R.D. and maybe ulcer issues. ALL THIS TOTALLY WAS ROUTINE. It did take almost a month to get the procedures scheduled, but everything all went well, including arranging all those rides to and from. (Thanks to Mo and Pat!)
Although his manner was calm and supportive as we talked about the results' what-if's, Dr. M's orders were more dramatic. It was a Tuesday and he ordered a thoracic CT scan and a boodle of blood tests to be completed by Thursday or Friday. Sutter couldn't find me a scanner for 10 days out. However, because all the blood work came back normal, Dr. M was ok with waiting for the scan.
CT scans used to put my mom in a claustrophobic panic but my first time was an adventure. The dye injection kinda hurt but overall the machine was cool and the process quick and easy.
The results, a few days later, only confirmed Dr. M's visual - a 9 cm x 9 cm x 9 cm mass was discovered. Nobody was calling it a 'tumor' yet and I had no idea where it was other than "liver" near "the top of stomach". Again, Dr. M was broad in describing what it might be, although the pictures confirmed we needed to now discover exactly what it is. He ordered a CT assisted needle biopsy.
Again, there was a several-day wait to get the procedure on the books. For me it was getting real, now that someone was going to stick me with (I imagined) a big, long needle. One does not go "out" for this because you have to work with the CT scan process -- holding your breath (while relaxing at the same time) as the machine takes its pictures. Overall, the nurse and doctor made the experience low-stress. The only thing that hurt was, ironically, the shot of the local anesthetic. But I didn't feel the biopsy needles at all. (Big thanks to Phil for transportation that visit.)
The pathology report took a week. This time the call from Dr. M was positive. He said things like "I'll take it…out of the woods…positive. There are no cancer markers in the blood work, red and white blood counts normal." However, he also said the biopsy was, "…inconclusive. No cancer cells were found but what they did find was odd and even unexpected. At your age, and for the size of the mass, we can't really let it go. We need to go in for second look - this time a surgical biopsy."
I was scheduled to see a surgeon then, Dr. Antonini, who showed me the scans and carefully described the nature of the mass. I learned it is fully INSIDE the second node, left half of the liver. That was my first understanding where it exactly was. I had been envisioning a tennis ball but this was more amoeba looking (and actually more the size of a racquetball). Dr. A suggested that perhaps another, more thorough, needle biopsy would be better than surgery. He discussed with the radiologist over at Sutter Faith (the hospital in Auburn) and they decided the next day to schedule it, yet another week out. (Thanks to Phil and Eleanor for rides!)
This visit was silly. I was scheduled as an ultrasound-assisted needle biopsy but the radiologist (apparently the head of the department, the nurse and tech assured me) pops his head in the door after I'm all gooped up to announce that he doesn't do it with ultrasound, and we'd have to use a CT scan. He'd requisitioned the unit and we would move over there as soon as it was 'cleaned'. The procedure went much like the last one, EXCEPT this time I had that nasty dye like the original CT scan. They did more samples this time around. And then the waiting -- another week for the pathology.
Through these weeks I held back my nerves by staying busy - but even so, the call took me by surprise when it came. Joel was visiting for the long Labor Day weekend and we had a lot of activities planned which included digging into some software that helps you write your will. Suddenly I had a whole different perspective about that!
Joel went with me to Dr. M's office where he laid out all the possibilities. It was all pretty general but he led with the TRANSPLANT option. I went from "probably out of the woods" to "transplant" in one giant banana-step.