Category Archives: advocating

Doctor, Doctor Give Me the News

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Terry had a follow up appointment with the cardiologist two days ago.  Dr. Brown has been really good about seeing him more often post thyroid cancer and pheochromocytoma, so it was a chat about how things are going.  It truly is hard to know how much those two separate conditions played into his overall cardiac health, so I have appreciated the additional visits with him.

It has been frustrating, however, that he has not been willing to consider how the nausea and vomiting that have occurred for almost seven years might be tied to his cardiac condition.  After some discussion regarding theoretical causes, he was willing to consider a problem with either a blockage or potential limited blood flow to his intestinal system.  Dr. Eck, his endocrinologist, has supported that idea with us, so we were able to secure a referral for a dye contrast scan to look at blood flow.  

He gets that scan on Tuesday, the 10th of May.  That gives us the opportunity to get those results to KU Med for his appointment with the GI department the following week.  It was the vomiting that prompted the referral to KU Med last year, but once they found the other problems the vomiting issue went to the bottom of the heap.  Discovery and treatment of the two conditions last year did not have the additional benefit of eliminating the nausea and vomiting, so we have hopes this test may yield information.  There has to be a physiological cause.  End of discussion.  Just because they have not determined what it is yet does not mean it is not real.   

All things considered, his cardiologist is pretty encouraged he’s doing as well as he is.  Terry did admit to him, and had not admitted to me, that he’s noticing he’s getting winded and needing a break if he’s out in the garden or trying to work on something for 30 minutes or more.  There have been several times when I felt he was breathing harder than usual, but he always minimized any concerns.  Listening to him confess to the cardiologist confirmed what I’ve noticed.  He’s not having much swelling to his hands or feet yet, so I hold onto that piece of good news while we have it.  

While it won’t surprise me, it will be disappointing if we find out his nausea is a by product somehow of his cardiac disease.  I realize everything he’s gone through has been difficult to diagnose, which I reminded Dr. Brown, but I have pushed hard on the cardiac side of things for answers for a while now, and we could not get any doctors, much less the cardiologist, to consider the connection.  As long as we finally get some answers I’ll forgive him if it turns out to have a cardiac component.  We just need to know.
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Thanks For Nothing….

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How does it happen that you think you’re prepared for something, but when the real event happens, it turns out you really didn’t have a clue?? I thought we were prepared to receive bad news, but the bad news we were expecting turned out to be potentially better news than we received.


We were both prepared, I think, to confirm that the mass in his adrenal gland was malignant. What we weren’t prepared for, and I’m not sure we’ve processed yet, is that the malignancy may have metastasized from someplace else. How does that happen when someone is in the medical condition he’s in, and going to different doctors all the time? It’s becoming eerily reminiscent of what I experienced with both of my dads. One had Parkinson’s and was under medical care, and one had emphysema, and was under medical care. My stepdad died less than 5 months after his diagnosis of cancer that had metastasized to his brain and spinal column, and my dad died less than 7 months after his diagnosis of lung cancer.

I’m not saying I don’t expect Terry to make it through this year with whatever they find. But I am saying I’m extremely distressed to have been as demanding as I was about what he needed, only to be denied, and now possibly validated that something major was happening. There are times you want to be right, and times you hope you’re not right. I didn’t want to learn that he may have cancer in multiple places in his body. I wanted them to determine without a doubt that nothing was going on. They didn’t, and there is.

But to learn that it may have originated in the bladder or prostate was a cruel blow. As far as we knew, there were no problems with EITHER of those areas, and it turns out one those may be the site of origin for the cancer. And there’s a chance it might not be either of those sites, which means there could be more bad news to come. For now, I’m going to keep reminding myself that at least they may be on to something, and there is hope.

It has reinforced my understanding of the fact that despite the fact that doctors are the professionals, they aren’t the one living with whatever medical condition it is that makes one seek out medical care. When they disregard the patient, and the patient’s loved ones, they do a real disservice to those patients. If they had quit reverting back to their protocols and looked at the situation through different eyes, or our eyes, they might have seen something that might have made a difference.

We can’t change what’s happened. We need to look ahead and plan for the future, whatever it may bring. We’ve worked too hard to get there.
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How To Be Heard…Or Die Trying

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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.


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