December 10, 2024 [Day 11]
Waiting without knowing is the worst, I think.
Yesterday The Droning Voice and I went to consult with the oncologist at Oklahoma Cancer Specialists and Research Institute (OCSRI). I’m not going to say his name, because I don’t want to get him into trouble. We suspect the problems we are experiencing are not the actual doctors’ fault, rather Ascension and Ascension St. John Jane Phillips Medical Center use an administration model that puts profit before patients. We think the same holds true for Oklahoma Cancer Specialists and Research Institute (OCSRI) and Utica Park Clinic.
I think (actually I know) some or most doctors put a lot of thought and effort into the difficult challenge of breaking bad news to their patients. Yesterday was like that. If you recall, last week there was a CT scan at Ascension St. John Jane Phillips Medical Center that found stuff, and we pushed on them until they scheduled the MRI they subsequently ordered in a timely manner (they originally scheduled it for December 23 but we got it done on December 3). After the MRI the ER doc expressed “cautious optimism” saying the mass on Kathy’s pancreas “does not look like cancer looks.”
I am guessing the oncologist was not a part of that conversation. Before yesterday’s oncology consultation, the oncologist got with the radiologist and reviewed The Droning Voice’s MRI together. Contrary to what the Ascension St. John Jane Phillips Medical Center ER doctor told us, the oncologist and the radiologist concluded the MRI gives cause for concern. Apparently yes, there is an obvious pancreatic cyst that is most likely not cancerous, but then behind it there is another denser mass they feel is “worrisome.” They conclude The Droning Voice probably has something really bad. The oncologist gets high marks for bedside manner, given this is a task I would not wish on anybody.
There is a special biopsy where they use an endoscope outfitted with ultrasound and surgical tooling, and move all that gear down into her stomach. Her pancreas is just behind her stomach. From there, using the ultrasound to see behind her stomach, they remote-control the tool kit to pierce the stomach, get into the growths, and grab the tissues they need to bring out and look at under a microscope. This is not your standard doctor’s office procedure and will be performed by a team of specialists in Tulsa.
The biopsy will confirm malignancy with certainty and identify the staging, and Dr. Manus said he would also ask the specialists to determine if further surgical exploration could benefit Kathy. Both orders got put in yesterday. Today I was able to confirm both orders were received by the specialists in Tulsa, and I was given their phone numbers by the oncologist’s office, but they asked me to hold off for a day before leaning on them. So now we wait, again.
A very good old friend told me last night, “Although we pathologists are mostly invisible, we are the ones who establish the firm diagnosis in cases like this.” Pathologists are the ones with the microscopes.
If further exploration is recommended that will happen some time after the biopsy procedure.
If I have to be critical, and believe me I have been holding back, the report from the original CT scan from November 30 has a bunch of stuff on it that they never told us, and it’s pretty bad – all indications point to a high likelihood of malignancy based on the CT findings in Kathy’s abdomen, and an expressed conclusion right there on the report the findings are “highly concerning for primary pancreatic malignancy.” In fact, they did not give us a copy of the CT scan report at that time – we had to get it on Day 10 from the oncologist by asking for a copy. Although the ER did not show us the report, they did immediately order the MRI.
I got to see the CT report yesterday for the first time, but not the MRI report. I can only imagine what it must say. It is telling the first referral was not to a gastroenterologist but to an oncologist.
If there is a ray of hope, everyone agrees that pancreatitis also could look as described on the CT and MRI, and Kathy’s guts have been so berserk for so long, she could definitely have a royal case of pancreatitis. However, that’s a slim shot because of the way the growth is strangling her blood vessels – a hallmark of cancer – cancer or not, this could render it inoperable.
At this point it becomes the idle speculation of a non-objective partner (“I am not a doctor”) hoping-above hope it’s all a bad dream. I have to remember that, like to a hammer everything is a nail, well, to an oncologist everything is cancer. My fingers are still crossed.
A number of people have told Kathy and me not to get too far ahead. That is really hard, especially when Big Healthcare makes us wait like this.
The biopsy will answer the question. We have to wait for the biopsy. Meanwhile Kathy is getting no real solutions for her discomfort, but she takes medication for pain. Eating continues to be dicey, so she’s low on energy and losing weight. What we ask from those here on the ground with her is understanding and compassion. At this time of year for a musician, it’s hard to just sit and rest but she needs as much of that as she can get. Prayers? Pray that everyone involved will have the confidence to know we move together with God, and please admit to yourselves and God that we/you realize the jigsaw puzzle is larger than we can understand, nor is it our right to understand it (like we desperately want to most of the time). We are all fellow strugglers. Those of you not here on the ground in the thick of it, please pray that Kathy is surrounded by the kind of loving support she will need to get to the light at the end of the tunnel no matter what.
Another fair explanation is a standard-issue pancreatic cycst has grown to squeeze off the pancreatic ductwork that delivers digestive chemistry into her digestive tract, causing them to back up and digest irritate her pancreas instead. Apparently this is not uncommon, and could be the cause of her symptoms. So I for one want them to just get that damn thing off of there and see what happens. A partial removal might-could get this done, even if they have to leave the part that’s tangled up in her blood vessels.
Ach, did I say I am not a doctor? Now I’m just talking like a mechanic.
I’ll write next when we have a firm biopsy date so we will get a look at those cells. We hope it will be a successful biopsy procedure, revealing cells still calm in the midst of surrounding turbulence. We all know that particular woman is one of a kind !