Cancer Sucks…

Two nights ago was a tough one for me.  Terry has been through so much already health wise that I’ve long since made peace with the fact we will not grow old together.  We have, and will get older, and we’ve been lucky so far.  But I’m concerned for him that he may continue to get news like this that chips away at his overall health, and I’m worried about Molly who has plans for her future that include him. It really hit me that night that night that he may be entering a phase where it’s one diagnosis after another coming at him.

This latest diagnosis of cancer is the fifth health battle he’s gone through in less than 12 years.  He’s had a disabling heart attack, a staph infection invade his heart, thyroid cancer, a rare pheochromocytoma (adrenal gland mass), and now bladder cancer.  Throw in an undiagnosed vomiting syndrome over the past 7 years, and you have compromised health. These continued assaults on his health are bound to keep eroding whatever medical stability he has right now.  There’s never a chance to see if there might be improvement with his heart when his body is continually trying to fight off the latest threat. His bounce back time seems to be longer and longer after one of these events, which tells me they’re taking a toll on him.

If that is the case, then I’m glad we’re doing some of those things we’ve wanted to do, like traveling, while we can.  There’s no reason to think he won’t recover from this, but he will be puny feeling for a while.  At least now he can think about the trip we took this summer and relive some of the fun stuff we did while he’s recuperating, rather than feel resentful that he has little control over his life.  Neither of us engage in pointless questions of why this is all happening, which makes facing each new challenge a little easier.  It also makes me appreciate his willingness and ability to accept without complaint what happens.  That’s not to say he welcomes the bad news.  He does not.  But when we can focus on the things that matter to us, rather than the things that happen to us, it keeps our spirits higher and better able to handle those setbacks when they occur.  Because they do occur.

He’s got a good doctor who is optimistic about the outcome, so we are optimistic as well.  We’ll get this behind us and hopefully be able to ease into the holiday season at the end of the year just a little more grateful yet, for what we have.  But for now, we have to get through Friday.  It can’t get here soon enough.

 

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Starting the Search Again

Terry had an appointment today with the urologist.  He’s been having some blood in his urine that continues to come and go.  They did labs and a urine sample, and he’ll go back in a couple of weeks to get scoped and look up into the bladder.  Hopefully we’ll hear back fairly quickly on the PSA, and whether it’s elevated from last year.  They’re leaning towards chronic inflammation, or prostititis as the culprit, but have to rule out the chance it’s cancer in the bladder or urethra.

Interestingly, as we waited for the doctor to come in I was reading a magazine article talking about the increasing number of patients who cannot get a conclusive diagnosis.  There are approximately 23 million Americans who cannot get an accurate diagnosis of their medical problem.  I know that Terry has never had a condition that was easily or quickly diagnosed, but the number 23 million seemed staggering to me.

That’s 23 million people, as well as the people around them, who are dealing with chronic health problems of an undiscovered cause.  I know the frustration we’ve endured trying to get a diagnosis, or at least an idea of the cause of Terry’s vomiting.  I know that when they’ve been unable to tell us what he’s experiencing, they’ve attempted to deflect their inadequacies at diagnosis by making it Terry’s fault.  If they can’t figure it out, it must be because it’s psychosomatic, or all in his head. I had no idea there were so many other Americans out there dealing with the same disruptions in their lives, not knowing why something was happening to them.  It’s the type of club you shouldn’t want to join.

It’s a sad commentary, in light of what health care costs are in this country, that there is such a level of substandard care.  The article listed 3 reasons it’s difficult to get a diagnosis in difficult cases.  One is the result of medical school training that says to look at the most common reasons for the symptoms being exhibited.  It also talked about a reliance on labs and testing, and finally, the overuse of specialists.  It’s easy to see how the that trio of actions can work together against the patient if it’s a rare or unusual condition.  If doctors only look at what labs and testing can tell them, and if specialists only consider their discipline, it’s going to limit options.  When a doctor only considers those conditions that are more common, it’s hard to get that thinking out of the box.

I’m sure there are no easy answers, but I do know that it requires extra vigilance on those who have health concerns, and those who care for them, to keep pushing until the diagnosis is made, and correct.  There is no hope for effective treatment when you don’t fully understand what you’re treating.

So as we enter yet another phase of finding out what we’re dealing with, I encourage you to keep pushing when necessary, to get the answers you or someone close to you needs.  We have to advocate for ourselves and the ones we love when it comes to health.  There is nothing more important than your health, and nothing more worthy of your time than making it all it can be.

 

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Doctor, Doctor Give Me the News

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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