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.

d414a9c1a146395f57ceea5004ba6281

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.

a13ff83b8567aef0c8e3c65b93b1ea02

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….

f1f8abf5ac8eb80a40259d9e283b33ba

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.

30fb5ebc2ec05dfdcbf6bc76f431e5ce

Does Quality of Life Matter?

Posted on 05/02/2011 by Caren Rugg

After Terry had a three day hospitalization earlier this month, we have decided it’s time to ramp up the diagnostic end of things again. The hospitalization was for the extreme vomiting, which we truly had hoped would abate in time after his surgeries last year. It has not. Apparently we are no closer to understanding this than we were in November, 2004 when it all began.

To that end we are headed back to the GI Department at KU Med next month. There’s a part of me that thinks we need a predetermined amount of time we will invest without answers, and then request the referral to Mayo Clinic. I had originally believed if we found out the problem locally it would make whatever treatment was deemed appropriate easier if it was all within the same facility. That no longer is a concern for me. I, and the rest of our family just want answers. It has impacted all of our lives for too long, and has taken too much of a toll on Terry to go through this so often. Aside from those considerations, we would just like some semblance of normalcy in our lives. With recurrent vomiting that presents the possibility every day, his, and by association, our qualities of life have suffered.

He’s awakened early each day with discomfort that leads to pain, and pain that leads to eventual nausea. Whether he ends up getting sick or not is anyone’s guess, and we never quite know until he starts feeling like he’s past it whether it will go away or lead to the uncontrollable vomiting. As a result, he’s uncomfortable riding in the car for very long, and I’m reluctant to make any more air travel arrangements for him given the uncertainty of each day’s potential for vomiting. Not much fun for him, and not much fun for me. I’d like this time I’m at home with him to be an opportunity for us to do things together and travel some while we can. We talk about traveling, and “plan” short excursions, but don’t seem to make it far from home. When it gets down to it we’re both afraid he just won’t be able to do it.

As frustrating as it is to feel like quasi hermits, it’s even more frustrating to not be understood by medical professionals. There’s a tendency by healthy individuals to gloss over notions like quality of life. When someone has faced life threatening situations, multiple times especially, it’s easy for others to think whatever life we have together should be satisfactory, because he is, after all, still with me. I understand the motivation in telling me that, but being on the receiving end of attitudes that essentially say it doesn’t matter if our lives are less than satisfactory if we are still together, feels a bit like being unvalued. I don’t care much for that attitude, and think if they could live this life for a while they would understand. They would want answers, too.

Just because doctors and specialists have not been able to diagnose his problem does not mean we should just give in and accept this way of life. Terry is still too vital a person, and we are both too young to be expected to just accept this is how life has to be for us. I refuse to, and am thankful that our primary care physician is on our side and supports what we do.

I spoke with him after Terry’s discharge, and asked about the possibility of a letter from him for Terry’s file at the hospital. When I take him in, they do not start any fluids or meds until they’ve scanned his abdomen and run labs on his blood. While I appreciate they have protocol to follow, from my perspective it’s just additional costs to Medicare that are unnecessary. We have been through this too often to not recognize the symptoms when they rear their ugly heads. I’m hopeful if they start IV fluids and anti-nausea medications faster than they have in the past, it may help end the vomiting sooner, and that would allow him to go home, rather than be admitted yet one more time. We received a copy yesterday of the letter our physician submitted to the hospital to be put in his record. It may not help, but at least it feels like getting a little bit of control.

Control is good, but answers are better. As he goes through additional testing and diagnostics, I’ll try to keep this up as a chronological record. It seems like to much to ask for, but if they can’t diagnose and treat, I hope they can at least give him tools to help cope. Whether it’s a medication or a behavioral change, he needs something. I may need something myself if he doesn’t get it!!

37693d179b818d719c6e578ff85c3638

I’d Like a Second Opinion on That Referral

Posted on 07/06/2010 by Caren Rugg

Almost two weeks ago, we met with the oncologist who did the post surgery follow up. He explained that based on the size of the mass on the thyroid the radiation was a non-discussion item. The recommended course of treatment on a mass the size of Terry’s is always the radiation.

He was going to refer to an endocrinologist, who will not only oversee the radiation, but will also be responsible for making adjustments on the synthetic thyroid med he takes. We were told to call the oncologist’s office if we did not hear from the endocrinologist. I did that, and the nurse for the oncologist let me know she was having trouble hearing back from them as they had requested the paperwork be sent again.

Having seen the slick system KU Med has for utilizing computerized records, I’m having trouble understanding how they don’t have access to the same information all the other specialists from KU Med obtain. Irregardless of whether they truly do need the paperwork submitted again or not, the simple fact that they have not contacted us to let us know what the delay is has caused me to determine I’d prefer a new referral to someone different.

What we found when he was referred to the urologist and his follow up is that there is a difference with doctors who are in the same facility. When we receive personal calls from some doctors, and others cannot be bothered to have procedures in place to facilitate referrals, it’s easy to see when there’s a break down in the system. The urologist’s office took a full week to contact me after I’d called his office asking for confirmation of whether Terry was to discontinue the antibiotic he has prescribed for the prostate issue. Discharge papers after his surgery said he was not to take it, so it seemed worth clarifying. I asked his nurse to have him speak directly with the oncologist, because it seemed to be a doctor to doctor discussion to me. He never did that, and it took a week to get the call back from his nurse.

I’m hoping there is no problem with Terry having a lapse of a week not taking the doses as prescribed. If not taking it consistently and continually alters the effectiveness, then he needed to know that. Apparently, the urologist wasn’t worried about a time lapse since the call back took a while. But whether it mattered or not, it’s bad business to ignore your patients. I’m entrusting Terry’s life with these physicians, and if they cannot be bothered with his care, I’m not sure Terry should be bothered with having them as a specialist.

It’s been a holiday weekend, so if I don’t get a phone call from the endocrinologist’s office tomorrow, I’m going to request a referral to a different doctor. Maybe if I’d been more demanding when this all started it wouldn’t have gone on as long as it did. If it was a hard lesson learned about self and caregiver advocacy, then I need to not lose the lesson. If they can’t be bothered to be timely, I can’t be bothered to schedule with them for Terry’s care. Seems simple enough to me.

10b769ac48419c850e40170e450122c4

The Medical Mystery Tour

Living with chronic illnesses, and the challenges they present in diagnosis, treatment, and quality of life. Come along for the ride with us!

Category Archives: referrals to specialists