Getting to the Gists Of the Matter

Posted on 04/17/2012 by Caren Rugg

As Terry moves closer to the two month post surgery date from his surgery for bladder cancer, he is going to start making the rounds of the other “gists” who treat him. He begins with the endocrinologist tomorrow, and then visits the cardiologist two days after that. It should be interesting to hear their take on what’s transpired with him since he last saw each of them.

An interesting aspect to these doctors he will see this week is they are both women. I know we shouldn’t be making generalizations, but those two women are the two doctors he sees on a regular basis who actually listen to him and look at total body involvement. One of our complaints is that the specialists specialize, and as he experienced at the last urology appointment when they learned he was having trouble sleeping and needed a sleep aide, they don’t want to deal with anything outside their specialty. I may be a bit biased where he’s concerned, but it seems to me a patient who has been through all he’s been through would recover better if his body actually got recuperative rest. When you sleep in two hour blocks at night, you are not getting the kind of rest your body needs even if you haven’t been through the stress of cancer, chemo, and surgery.

He has seen the cardiologist, as he could not go through the surgery without cardiology approval, but he’s not seen the endocrinologist. He is taking very few medications right now, so we’re both hopeful it remains that way. Without an adrenal gland and his thyroid his energy is definitely still an issue. I have to believe if he got adequate sleep his energy levels would benefit as well as his overall healing.

His weight continues to be a concern, and that is one area that the endocrinologist may be able to address. If he’s currently “amped” up too much on the synthetic thyroid he isn’t going to be able to keep weight on, or sleep well. The lab will likely be based on labs drawn a couple of months ago when he was hospitalized, so it’s hard to know whether time would make much of a difference looking at those levels. He may have to do that again to get accurate information.

I think she will be very surprised when she sees him. The cardiologist saw him just prior to the surgery, but the endocrinologist has not seen him at all since the diagnosis of bladder cancer. Even though his beard and hair have started growing back in, his face is still very gaunt, and the weight loss shows on him.

In some ways, starting to attend appointments with the other doctors in his life is a symbol of things getting better. The more he’s getting around, the less we are reminded of the urgency that had been associated with the stage 4 bladder cancer. It generated an intensity that we’re both glad to be rid of for now. Hopefully going to see the other specialists he works with, those other “gists” who take care of him, will begin the path to our new normal, whatever that may be.

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Is There A Point?

Posted on 04/03/2012 by Caren Rugg

Terry is making his round of post surgery doctors’ visits after surgery in February for stage 4 bladder cancer. The last appointment was three days ago, and was with the physician who had been in charge of administering and monitoring the chemotherapy. It took five hours out of our day, and had us wondering on more than one occasion why we were there.

As is always the case in the teaching hospital where he has been treated, we see the resident before we see the doctor in charge. But before she came in, the aide got his vitals information, including his medication list and what he was currently taking. Based on what she was told about a blood pressure medication he takes, a pharmacy tech came in to speak with him as well. Terry does not have, and has never had high blood pressure. He has been prescribed various blood pressure medications over the years ever since his heart attack. The intent of one of them was to access the beta blocker capabilities, and one of them worked to reduce the workload on his heart. While she got various information about his medications, she also asked some questions related to his pain and sleeping.

Terry has never slept well. He doesn’t sleep longer than two hours, either at night or during the day. This has not changed with the latest surgery as a treatment for bladder cancer. I explained what he’s tried over the years and that he has never had a prescription for a sleep aide. She told us we should speak with the doctor when he came in. The resident came in before the doctor, told us she had spoken with the pharmacy tech and informed Terry he should make an appointment with our primary care physician for a prescription for something to help him sleep. We had already acknowledged the PCP got all of the reports that were in Terry’s medical record, but were told Terry should make a separate appointment with him to obtain what we were discussing in the exam room.

It occurred to me that we were dealing with one of the problems with health care today. Doctors specialize, and when they specialize they neglect to deal with the total body. They focus on their specialty and what impacts it, and disregard everything else. Why should Medicare and his supplement be charged for another doctor’s visit, which probably would have included lab charges, when he was sitting in a doctor’s office at the time? Doesn’t it make sense that the doctor he sees makes a determination and provides documentation to the primary care physician so he’s in the loop?

When the pathology report post surgery showed that the tissue removed was cancer free (as far as they could tell), it became a point of contention for me. I didn’t understand why they hadn’t done a scan to see how the cancer was responding to chemo, and were moved forward with the same plans that had been laid out even before chemo started for surgery on Terry, and aggressive surgery at that. Why wouldn’t they want to ensure they weren’t unnecessarily removing someone’s internal organs before doing so?

The resident acknowledged that Terry’s response to the chemo was not standard. Even though he had only received 75% of the treatments they had originally ordered, the cancer had retreated enough that they could no longer find it. Now, in full disclosure, I had looked online at some information with his pathology report in hand. It confirmed the strain Terry had was aggressive, and the only eventual treatment was removal of the bladder. I wasn’t saying he wouldn’t have had the surgery, but I am saying he might not have had to do it for months, allowing him to live a more normal lifestyle. From my perspective, he didn’t have to undergo such a dramatic surgery quite as soon as he did. It was a quality of life issue.

When the doctor came in he let us know the concerns about quality of life had been reported back to him. I explained that for someone like Terry who had already lost so much physical capacity to various illnesses this was one more event that had impacted not only his, but my quality of life for the rest of his life. The doctor sat back, turned to Terry and explained what would happen at the next appointment, and then turned to me. He said we could address quality of life issues at the next appointment. It was too late to be of benefit to Terry, but if we have at least triggered a thought with him he’s never had before, it may lead to a different way of interacting with patients. We can only hope.

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The Waiting Game Begins Anew

Posted on 03/12/2012 by Caren Rugg

It’s been two weeks since Terry returned home after surgery for stage 4 bladder cancer. The first week at home was good, but there was an interesting development the second week. I say interesting, because I’m still trying to stay positive, but these surprises are getting harder and harder to get through.

A week ago Terry noticed when he stood up he was getting wet. It was easy to assume at first that the bag was leaking, or in the first instance, which occurred when he got out of the shower, was water he hadn’t gotten dried off. You try to make excuses or explain what you think is going on when you really don’t know.

Of course, neither of those were the cause. At his follow up appointment two days ago with the surgeon we learned creatinine levels were rising after lab results were provided. Creatinine increases show a problem with kidney function. As as a result of the labs and the leakage, they sent him for a sonogram to look at his kidneys. The sonogram tech who did the test was concerned enough by what she was seeing that she took multiple pictures of the same area to send to the physician while Terry was still there. She thought he might want to keep Terry there based on what she saw. Evidently the doctor did not share her concerns, and sent him home.

This whole experience has served to further ding his quality of life with problems we didn’t anticipate he would have, so we were woefully unprepared to address. Now the guy who doesn’t have a bladder, and has a hole in his abdomen that drains urine into a bag, is wearing incontinence briefs because he has urine pooling in his abdominal area that drains when he stands up. There’s no real opportunity to deal with the changes that have come with having his bladder removed, because the leaking is an immediate problem that has to be addressed. I’ve told Terry he’s going through more clothes than a newborn right now, except his clothes are so much bigger it doesn’t take long before a load is gathered for the washer.

During this description I have been referring to the liquid drainage he has as urine. When at his doctor’s appointment on Friday he was asked if he could provide a sample. He filled a specimen cup more than 2/3s full with a yellow liquid that sure looks like urine. I will be extremely surprised if the analysis comes back as something different. When it first started and I called the urologist on call, I was told it was not uncommon for the body to retain fluids during chemo and the stress of surgery that could have started being released during the recuperative period. As long as he wasn’t running a fever or vomiting there was no need to be overly concerned. It seems so much better an option to wait until those problems have presented themselves to deal with it…

For now the waiting game of figuring out what they’ll do and when they’ll do it begins. I just know I’m tired of Terry having a tougher time than necessary yet one more time. And he is as well. This is taking a mental toll on him, which does not help him get better. We thought getting better was the name of the game. Turns out it’s the waiting game again instead. We certainly are familiar with that one.

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Think You Know? Guess Again.

Posted on 10/24/2011 by Caren Rugg

When it comes to disclosing medical conditions and potential treatments, we’ve learned the hard way that even when you think you know what’s going on, you don’t know it all. I understand doctors don’t have enough time to invest determining how a patient or patient’s family member will react to bad news and tailor their discussion accordingly, but it’s frustrating to learn that we didn’t know nearly as much as we thought we did.

After the scope of Terry’s bladder that discovered the cancer there, the urologist was very upbeat and optimistic about the procedures and Terry’s likelihood of going home the same day with no catheter. Standing beside his bed minutes before the surgery, we learned that not only was the cancer in his bladder, but was in the urethra, and running through the prostate. He is still confident that they will be able to get it all, but they will not be doing it the way Terry and I understood the procedure would be done. We both thought that they would remove a layer and send it to pathology, and keep repeating that process until the sample came back clean. They will not. They will take all they think is necessary, and then that will be sent to pathology with results to be provided approximately 5 days later.

This means that he may potentially have to undergo longer chemotherapy than anticipated. He was told that he would just have the initial treatment after surgery to make sure they got all cells, but if the pathology report comes back with negative results, he will have to complete a more comprehensive treatment course with chemotherapy. It was also disturbing to learn that the cancer was more extensive than we were initially told. He knew about the malignancies in the urethra, and had briefly mentioned it to Terry at the time of the scope, but I did not know anything about it until right before his surgery.

I’m struggling to understand why there is not full disclosure by physicians about the real extent of what Terry will go through. The details always seem to come after the fact. They will let us know the possible negatives consequences of the treatment or procedures, but withhold details about what to expect when the treatment or procedure is completed. I’m sure there is logic on their end about what they’re doing, but from the patient’s standpoint, there’s a world of uncertainty enveloping them.

It also doesn’t help the wait for me while he’s in surgery to find out minutes before that there is more going on than previously revealed. It leads to questions that are not productive and makes the wait even longer and more difficult. In the vast and complex system that is the KU Medical Center they may have to tailor all procedures to benefit doctors and medical staff. But I will never believe that less information is the way to go. As long as I’m fighting for Terry’s health, I refuse to think less is more. It’s not.

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What a Difference a Day Makes

Posted on 10/11/2011 by Caren Rugg

I stand corrected…two days ago I was bemoaning the fact that Terry had to go to KU Med for a bladder scope after he had started treatment for a UTI with a long course of antibiotics. The urologist had already told us he felt there was little to no chance of cancer, based on the symptoms Terry was describing. Imagine his surprise, and ours, to find out there was cancer already established in his bladder.

He should have a single surgery to remove the masses in a week and a half, and they will then insert a chemotherapy into the bladder post surgery. Should it all go as planned, it will be an outpatient procedure, and I will bring him home that evening. It does appear that he will need to have his bladder scoped every three months which he’s not looking forward to much, but will do to make sure it doesn’t come back.

It was an interesting conversation afterward with the urologist. He was genuinely surprised to find a malignancy occurring when he legitimately thought cancer was not a possibility. Finding it validated why I had gotten him an appointment when 3 other doctors he’d seen had not made the referral. I understand that at first glance his symptoms belied the true origin of what they were. Thankfully, as the urologist stated, his training included doing the scope that was performed on Terry. He told me some patients cancel because they don’t like the procedure, which is understandable, but it is his responsibility to do what needs to be done, not what they’d like done. His prudence paid off where Terry is concerned.

We have every reason to believe all will turn out fine, but I can tell the continual stream of bad news health wise is taking an emotional toll on Terry. He’s never easily or quickly diagnosed, and he’s been through so much already. It’s that emotional strain on him that I worry about. He has never been good about effectively dealing with his inner turmoils, and that can and does have a negative impact on his physical health.

Yesterday was a surprise, and now after 24 hours to process I know he will get through this and we will go on to see what else comes our way. It’s an affirmation for me that I made the right decision to be at home with him. We can only live the life and make the memories we can make now. We have to be confident that everything we do now will make the future easier. For all of us. It’s the only way we can live.

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Is This Really Necessary?

Posted on 10/10/2011 by Caren Rugg

The labs came back on Terry’s blood work, and he does have a urinary tract infection that is being treated with a 90 day course of oral antibiotics. Because they identified the cause of the blood in his urine as the UTI, we were surprised to find out he is still scheduled to have his bladder scoped tomorrow afternoon. While I obviously want them to find anything that is medically wrong with him before it becomes a major health threat, I am starting to question how much is done in the name of effective diagnosis, and how much is done in an attempt to prevent liability suits from being filed.

I understand if there is a risk of cancer, given his history, that it may make them want to conclusively rule out its potential. I get that. But if they’re concerned about cancer in the bladder or urethra that would encourage them to do more comprehensive testing, why are we not aware of their concern? It’s a frustrating dance we dance of too much unnecessary or repetitive testing that they want, and not nearly enough of what we think would narrow in on his problems. Because of his Medicare and supplemental coverage, doctors are all but guaranteed to get reimbursed for their services. I don’t want to start traveling down the road of cynicism, but it’s harder all the time to consider all they do as strictly in Terry’s best interests.

When I take a step back and try to look at the situation objectively, I’m forced to admit that of all the medical events he’s been through, not one of them was easily or quickly diagnosed. From that perspective I should be glad they are doing too much if it means they stumble on to something that may truly be problematic for him. That’s how the pheochromocytoma and thyroid cancer ended up being diagnosed. As a result, I know I shouldn’t complain. Doctors have gotten lucky when we’ve needed them to be. Evidently I’m thinking skill and expertise should trump luck.

We’ll have to see where it goes tomorrow. Chances are (hopefully) that they won’t find anything. We’ve been surprised before, but maybe the surprise this time is they don’t find a problem or additional health risk to monitor and follow. It COULD happen….

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Starting the Search Again

Posted on 09/26/2011 by Caren Rugg

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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Thanks For Nothing….

Posted on 04/09/2010 by Caren Rugg

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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