How To Be Heard...Or Die Trying

I've had some time to digest the news of last week that there is a mass in Terry's adrenal gland. The more I think about it and chew it over and over in my head the more frustrated I am with the conclusion. There's a good chance this is malignant, and we'll find out more after meeting with the oncologist on April 8.

The frustration stems not from knowing he may have a malignancy, but rather from the perspective that whatever is there might have been discovered sooner. Terry's family history includes his father's death from colon cancer, which Terry tells me started in the abdominal cavity and encroached into the colon, metastasizing there. I've maintained for some time that he needed a scan of some type to determine whether there was something there. Evidently, you must follow a series of other diagnostics and tests to rule other things out before you can justify doing a scan; specifically, a PET scan which can determine with a high probability whether masses are malignant or not. Terry was subjected to the same type of tests repeated at different times that never revealed anything.

I have to wonder what happens to those who don't have advocates looking out for them and attempting to navigate the system on their behalf. Are they just routed through standard protocols until at times it is too late? The attending physician at KU Med in the Gastroenterology Dept last week looked at me as though I had a third eye when I was questioning why he wanted to subject Terry to repetitive tests that kept coming back negative. They did do a CT scan on Friday to rule out a brain tumor, so I suppose that's thinking outside the box where recurrent vomiting and abdominal pain are concerned.

I'm not trying to borrow trouble and worry about whether it is or isn't malignant. But if it is and he has to endure surgery, chemo, and radiation as research online suggests, I will always wonder whether it might have all been avoided. It might not be that he could have avoided it completely, but maybe it might have been discovered sooner than it was, with treatment minimized as a result. Had he not been in pain at the time of Internal Medicine Dept appointment and had an empty stomach because of the discomfort, we still might not know there was a mass.

For now I'll focus on the fact that we know something's there, and on April 8 we'll have a better idea of what we'll be dealing with to come. Until then, I'll try not to freak every time he's telling me about a new pain or discomfort. I'll remind myself to keep demanding of his doctors what we think he needs. They know medicine, but I know Terry and what he's going through. I'll keep working to be heard, and in the process protect Terry from unnecessary tests. It's all I can do to keep the focus on him.

We May Be On To Something

After beginning with the Internal Medicine Dept at KU Med Center, Terry had his first appointment with the gastroenterology side of things. Once again, we met with a third year intern, and again, he was interested and inquisitive and for the first time we felt heard.

He did have some ideas to pursue, and this is really the first time we've had any type of hypothesis about what's happening. Results of the CT Scan he had at the last appointment at KU Med showed a mass in the adrenal gland. They aren't sure what it is, and will be referring him on to possibly an endocrinologist. They will also do a CT Scan of his head to look at his sinuses, but also to look for the potential of a brain tumor. On the bright side, the doctor did say if there is a tumor, the likelihood is that it is benign. If it were malignant with as long as Terry's had the vomiting problem, he would be dead by now. Yay.....

Additionally, they will be checking for steroid levels, specifically the hormone cortisol. There will also be a four hour stomach dumping test, and a blood test which would indicate if it is vagel nerve related. The intern spoke of potential causes for the vomiting, and concluded his conversation with us by talking about cyclical vomiting, which is not diagnosed as to the cause. They do all the tests to rule out potential causes, and when left with nothing, term it cyclical vomiting.

After feeling optimistic for the first time in a long time that we might actually be making some headway, the supervising physician began by talking about cyclical vomiting. Terry had stressed with the intern that it was primarily pain now that was the issue, and not so much the nausea and vomiting. To begin the discussion with us by talking about having a condition with an undetermined cause felt like he was following a blueprint of diagnostic tests that they all follow.

I could feel myself becoming increasingly frustrated and irritated by this physician. We explained that much of what he was recommending, Terry had already been put through. I told him we needed to do something different if we were going to figure this out. So, to a certain degree, what I was trying to avoid with repetitive testing that was always negative was what he was going to experience. If it gives us the answers we need, it will be worth it in the end, but I can tell I'm losing patience with not knowing why he goes through this. The increased pain and disclosure that they've found a mass in his adrenal gland is making me think that this may be something that should have been, and could have been found much sooner.

I'm hopeful that's not the case and we're finally on track to find out the cause of his pain and suffering. I know we're both weary of living like this.

You Gotta Have Heart

Today was the appointment with the cardiologist. Dr. Brown has been the cardiologist since the major staph infection in Terry's heart in 2004. He's been equally frustrated with Terry's refusal to take his meds. He told him last summer that in his experience, patients who did not take their medications for 2 1/2 years or more had a 50% higher mortality rate. Terry has not taken his heart medications since February 2007.

Dr. Brown looked at the results of the last ECHO he had, which was in July of 2009. He said there had been a decline in his ejection fraction, down to 20-25 from 25-30 at the one prior to that. Now...when he had that test last July, I didn't accompany him to the appointment. Big mistake...BIG mistake....

He came back from that ECHO telling me the ejection fraction had been at 30-35, and the technicians who ran it told him everything looked great and he should keep doing what he was doing....when what he was doing was nothing. And I remember feeling frustrated at the time that despite his lack of attention to his own health, he was being given validation that he was doing everything he should.

That was negated today when we learned that he has had decreased function for the last two scans he's had. He's been so consumed with his nausea and pain that he's completely lost track of the fact that he's first and foremost a cardiac patient. He does not see the forest for the trees, even though it feels like I'm yelling "timber!!" on a regular basis. It confirms for me that making the decision to back away from work is the right decision. I think I have my work cut out for me.