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.

Does Quality of Life Matter?

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!! 

Diagnosis Part I

To say we have part one of the diagnosis is a good thing, but to have been working as long as we have to get a diagnosis, and still not have a complete one is frustrating.  Considering that the news we're learning is not all we'd hoped for, the longer it drags out the more frustrating it becomes.  


When Terry saw the local surgeon last week who believes the thyroid is connected to the functioning adrenal gland, we felt he was on track to something that would prove conclusive.  At the appointment with him today, we found the thyroid biopsy results were not yet in.  He told us he had attempted to contact the oncologist to speak with him directly, but could not get a call back.


Even more evidence of how convoluted and confusing this experience has become came when he told us he'd spoken to the primary care physician who had made the original referral to the KU Med system.  Our PCP had no clue of any of what was happening, but as soon as the surgeon started giving him lab results, he realized what was going on immediately.


This is where it starts to get complicated, so bear with me....


The labs Terry had showed that all hormone levels were outside the normal range.  They were all too high, and adrenalin in particular was very elevated.  This proved to him that while the adrenal gland mass was non malignant, it was functional.  Because of the continued increase in hormones, Terry had developed secretions called calcitonin or c cells.  These c cells create a pheochromocytoma, or tumor in the thyroid the surgeon thinks is causing medullary thyroid cancer.  


There are two reasons this matters.  First, it compromises his ability to safely get through whatever surgeries come his way.  There is already discussion about removing the thyroid and prostate, but before he can endure those two procedures he needs to have the adrenal gland mass removed so he is not bombarded with increased hormones when his body is stressed from surgery.  The second reason it matters what kind of cancer this is is the medullary thyroid cancer is more aggressive than more commonly diagnosed thyroid cancers.  This strain can spread early in the disease process, so it needs to be addressed before it does that kind of damage.  


After his appointment, I did get a call from the oncologist's office who confirmed the biopsy showed malignancy.  I told her what the surgeon had to say and that he had tried calling the oncologist, but it turned out he'd been on vacation.  (That's two of the doctors Terry needs who are/were on vacation...I'm trying to be mindful of the fact these doctors deal with hardcore stressful situations, but it doesn't make my situation any less stressful to be in a constant holding pattern trying to figure out what's going on with Terry.)  I called the surgeon's office to inform them the biopsy was positive, but they weren't saying it was medullary cancer.  He was going to call the oncologist and confer with him because he is convinced the oncologist is not seeing the total picture.  In the meantime, there is an appointment scheduled for Monday with the urologist who will do the biopsy, and what eventually may be the prostate removal.  None of that starts until after the biopsy, which is at LEAST another week away.  


Interestingly, Terry got a number from the national cancer website and called and talked to someone.  He, like I, is concerned they are going to find more.  He wanted to know how early it is that you can track these cells that either metastasize or create malignancies, but they couldn't answer his question.  Earlier we had discussed how confusing it is to think about what it is we want to be told is going on now that we have confirmed the presence of cancer in at least one of the two sites.  We literally have no idea where we're headed.  Yet.  We're hopeful each new appointment will yield insight, but they mainly serve to let us know we don't know much.  Yet.  


He also had an appointment yesterday with his cardiologist who reminded us his heart is still in tough shape.  His ejection fraction is fairly consistent in the 20% range now.  The cardiologist did not feel that would change much, but Terry did need to do what he needed to do to keep it from going down any more.  He was a bit surprised, as I think we all are, that Terry is going through yet another life compromising health situation. 


So, next week brings consultations with the urologist, the oncologist, and hopefully the scheduling of both his biopsy of his prostate, and removal of adrenal gland mass.   That would certainly feel like movement in the right direction!