The Longer We Go The Less We Know

Today was a follow up to last month's hospitalization.  We're going to have to get some definition and parameters around "it's going to take some more time" as that's about the only explanation we seem to get to Terry's most pressing issues right now.  Somehow it seems quite inadequate when it's been so long that we've been looking for answers.


His hearing, which has never been good, has been markedly worse since his surgery this past summer.  He complains of a ringing that never seems to subside.  His pain, that wakes him every morning, has gotten worse the past couple of months.  His energy, obviously impacted by the loss of an adrenal gland and removal of his thyroid, seems to be grudgingly limping along as he takes a medication to get those levels raised.


He had a hearing test last week, and was told he has a substantial hearing loss.  I could have saved Medicare some money, because the validation of that has never been in dispute.  He had an appointment with an ear, nose and throat doctor yesterday.  This doctor told him he didn't believe he could do anything to help him, and that it "would take some more time" before the ringing diminished and wasn't so much of an obstacle.  Having the thyroid surgery was one reason he might have ringing in his ears.  The doctor was unsure....


His appointment today was with the doctor who did his colonoscopy a few months ago, and his input was long term use of an antibiotic could cause ringing in his ears.  He also reiterated that the lack of energy would get better as his thyroid levels became stabilized, but again, it "will take some more time" before his energy levels are back.  The vomiting may continue to be an issue until those levels are back, and again, it "will take some more time."  Or so we're told.  One more time.....


As I pointed out to Terry after his appointment, his surgery was more than 5 months ago.  At what point will "some more time" be met?  This is beginning to feel very much like an easy out for doctors who aren't sure what's going on.  I know we should exhibit a bit more patience, but after all he's been through, we really wanted to have the worst behind him and an expectation of getting our lives back by being able to plan for things.   Evidently that "will take some more time."  


For the moment, we're trying to figure out what his new "normal" is.  We know not to plan anything for the earlier part of the morning, and so far that is working.  He had blood work done a month or so ago to see what exactly he's allergic to, and surprise!!  After years of treating seasonal allergies it turns out he doesn't have allergies.  To anything...no allergies, and no quick fixes. That's all we know for now....

Rerun and Repeat

Tonight ended up being a rerun of days gone by when Terry puked for hours or days at a time...or so we thought it was days gone by.  After surgery in June to remove his thyroid due to cancer, and his left adrenal gland to a pheochromocytoma, he hadn't had any more of these episodes, and we really thought he had turned the corner.  Either of those issues could have contributed to his vomiting, and combined, we had hope the root issues had been resolved.  


I'm finding that my patience is wearing thin with going to the local hospital.  I understand that the system is set in place for the benefit of the medical professionals, but I answered the same questions up to six times with different people asking.  At some point, if you're using a computerized system, which they are, the net result should be that the patient and or their caregiver are not asked the same repetitive questions.


In all fairness to a hospital that has been there when we needed it, it is difficult to describe my sense of frustration to find ourselves in that situation yet again.  It had been so long since he'd had a full blown episode like this one that we truly were surprised when it occurred again.  But the six hours I spent sitting in an uncomfortable chair seemed unnecessary, and led me to think about another chapter I need to add to the caregiving book I'm writing.  There has to be a way to advocate for a smoother system at the hospital for the benefit of patients and their caregivers this time.


Maybe if I shift my focus to topics like what I can write about, rather than what we're going through at the time, I may not end up so frustrated.  If I try to figure out how to benefit in some way from each experience, it has to keep me more positive than if I sit back and realize how many times we've lived this experience, and how unsatisfactory it is each time we relive it.  


I just know that I, and Terry, would prefer a new shared experience.  We'll have to see how we can make that happen.  And it should be something other than a trip to Mayo's, which may be about the extent of our new experiences for a while.  We need progress in a forward direction, and I'm determined to make that happen.

The Calm After the Storm

It's been a while since I posted.  Part of that is because things have been relatively calm and quiet on the healthcare front right now with Terry, and part of it is I've lacked the energy to do anything else.  I've officially entered the "Terry is ok for now, so Caren's body must give out" phase.


Because of my Rheumatoid Arthritis, extreme stress takes an even bigger physical toll on my body than someone without it.  Without fail, each and every time Terry has had a major medical event, I've gotten through it physically without much issue.  Until afterward....at some point my body figures out the immediate stress and demands are over, and it literally shuts down on me.  The fatigue and the pain of RA rear their twin ugly heads once I think I've made it to the homestretch, and humble me by forcing me to slow down.  It never ceases to surprise me, because I continually want to believe it won't happen THIS time.  But it always does.  Thankfully there seems to be a longer and longer lapse between his health problems, and my following and corresponding health problems.


All things considered, I should be happy that my physical meltdowns occur AFTER his medical events, rather than simultaneously occurring at the same time as his.  I'm not sure how we would get through these times of stress if we both were down.  Hopefully we won't have to find out.  


As far as Terry is concerned, he still complains of discomfort and still isn't sleeping well.  I'm not sure why that is, but think we do need to get some answers about those issues now.  My biggest concern, and again, keeping things in perspective it's not a big deal, but his voice is still not back.  He's raspy and doesn't have any volume, and he's closing in on 3 months since his surgery.  If there's an upside to that, I think the number of times he has to repeat himself because I could not hear him may have given him some insight into why I get frustrated at times when he can't hear me and I am continually repeating myself.  It does get old....


So, as we limp into September, we have his birthday, and my impending retirement from work on the 24th to look forward to.  Once I quit working, my goal is to use this blog as a basis for a book on caregiving, and I am ready, willing, and able to take on that new challenge.  At least I know in the immediate future if I have days like I've had lately, I won't even have to get dressed and out of my pajamas if I'm not feeling up to it!!  Oh, to simple pleasures.....

Heck No, He Won't Glow!!

I've let myself get a little behind, which is never a good thing.  In order to stay on top of what's going on with Terry, I need to make sure I'm timely with my information so it's correct and appropriate for the posting when it occurs.  It's too easy to let the little pieces of information slip away if I don't keep it current.


So, he has met with the endocrinologist who will supervise the radiation treatment as well as be responsible for getting his thyroid levels where they need to be.  It was a bit of a shock talking to her, because his oncologist had told us he would be hospitalized for 24-48 hours in isolation in the hospital because of the treatment.  He will emit radioactivity at high levels for the first few days, and then lesser amounts until it has been processed out of his system.  This doctor is telling us that while he will need his own bathroom, and separate bedding, and we can't get within 3 feet of him initially, it's all good that he do this at home.  At home?!?  Yes, he will swallow a couple of capsules with radioactive iodine, and do this all at home.  Our poor dogs are going to wonder what they've done wrong because they definitely won't be able to get close to him for several days.  


In the meantime, we've been waiting and watching for his TSH, Thyroid Stimulating Hormone, to rise as his thyroid levels drop.  When he hits the magic number of "30" he will be able to start the treatment.  It's taking a major toll on him, though, because in addition to his thyroid being gone and not having that regulator for energy and heating and cooling, he also is now missing that continual stream of adrenaline being pumped into him as it was before the surgery to remove the adrenal gland.  The combination of both factors are making it incredibly difficult for him to have any energy AT all.   I've told him all things considered, it was probably a good thing to have all of this going on during the long hot summer when he didn't need to be outside or doing anything much right now anyway.


We also met with the cardiologist this week, and surprisingly he doesn't feel the need to be in the loop of labs and thyroid levels as that process progresses.  Terry and I were both a little surprised about this, because the cardiologist is waiting to start re-introducing some of Terry's heart medications until after his thyroid level gets settled.  His partner was who Terry met with the week after the thyroid and adrenal gland surgery, so we had to tell him the events that occurred with the surgery.  We even told him about the oncologist theorizing that Terry may never have needed a pacemaker/defibrillator as the over producing adrenal gland had probably given false cardiac readings.  I was there for the heart attack...there's no question in MY mind that he needed it.   The cardiologist agreed the two issues were separate.


Results from lab work show Terry's TSH levels are rising faster than anticipated.  This means he will be going through the treatment much sooner than we had expected.  There's a real chance given he'll be doing this in early August rather than late August or early September.  Hopefully by the time his birthday rolls around on September 22 he may be feeling pretty good.  That might be too much to hope for, but hope for it we will.  It would be nice to have a "normal" life for a while.  

The Long Dark Tunnel to Nowhere

Last week Terry had his colonoscopy with the doctor who had figured out the pheo and what was going on with him.  By the time he came into the prep room where Terry was getting ready for the procedure, Terry had already talked with the nurse and the anesthesiologist about how rare a pheo is and that they'd never actually seen a patient who had one before.  His doctor is a young and enthusiastic surgeon, and was getting a lot of teasing about being so talented from the folks in the operating room before they got started.  There is no way to adequately thank him for his insight, as he literally saved Terry's life when it could have easily gone the other way.


The colonoscopy itself went very quickly.  The surgeon showed up about 20 minutes after they'd taken Terry, to say he was through with that procedure, but needed to do another one.  Terry had vomited blood after they finished, and the doctor wanted to scope his esophagus and look down into his belly to see what was going on.  He found one spot on his stomach that showed irritation and could have shed blood, but he didn't feel that was active and bleeding, so he wasn't sure where the blood came from.  While he was scoping in there, he also noticed that apparently Terry's stomach is not completely emptying, and there is "backwash" for lack of a better description, that occurs when the stomach tries to empty into the small intestine and flows back in.  He didn't feel it was a major concern, but they will continue to monitor that, especially if he continues to have trouble vomiting.  


There was a rather large polyp that was removed, but it will be a little while before the biopsy report comes back.  All in all, it was a fairly calm appointment, given what Terry's been through, and they still don't know that they've solved all of his vomiting problems.  But for now it IS better, and that's a lot to say with as long as it's happened.  I'm still not confident they've found all they need to find, but no negative news from the procedure has been good news.  


His next appointment is with the endocrinologist who will monitor his thyroid levels and direct the radiation he will undergo for the thyroid cancer.  

I'd Like a Second Opinion on That Referral

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.  

Working on a Future

Terry had a follow up with the oncologist the other day.  We will be adding yet another doctor into the mix, bringing the grand total to 9 doctors he's working with currently.  Nine.  Can you imagine?  Just keeping the names and specialties straight can be a production.  This one will be an endocrinologist and will handle the radiation and tweaking thyroid levels.  


We haven't heard from this new doc yet, but I find I'm getting a little anxious to get the radiation started and finished.  He won't have ongoing radiation like most radiation treatments.  There will be a capsule containing the radioactive iodine, and the iodine will travel to any places where thyroid cells may have traveled and kill the cells.  He will be hospitalized for 24-48 hours while he's radioactive, and that should be the extent of treatment. From that perspective it should be an easier route for him, but from my perspective, I'd just like to get any other treatments related to the thyroid cancer completed so we can start looking forward instead of continuing to be in a holding pattern.


I've been concerned that his voice is still not strong, but we learned it could be 6-8 weeks before that's back to normal.  Hopefully it will be.  He claims he's not nauseous feeling all the time like he used to be, but I see he's still making his evening rampages to the fridge and the pantry.  I really had hoped that would be a thing of the past.  Apparently it was not motivated by thyroid as much as habit.  Not sure how I can break that habit, but I can't feel it's good for him to eat in the middle of the night like that.  


He is starting to sleep a little better, so that has to help him.  It didn't seem possible for him to recover without getting some rest, so maybe that will accelerate the process a little.  I know if he had a job he'd be expected to be back at work now, so I need to be mindful that he's not on the same schedule for recovery that others are, even though he is doing very well by all accounts from the oncologist.  There still is a colonoscopy to be done, so his year of health fun is not over quite yet.  Not quite....


But he is doing better than I think I expected him to when this whole journey began to find out what was wrong.  I'm still not confident we've taken care of all of his health problems that can be taken care of, but I'm not going to borrow trouble by worrying.  I know I have to remain vigilant so we don't get to this point again.  Maybe we won't have to...we've certainly had our share!

To Hurt, or Not To Hurt

I am finding Terry and I have different thoughts about recovery, and those differences primarily revolve around issues of pain.  I realize my opinion is someone slanted, as I have a high threshold for pain due to migraines and rheumatoid arthritis.  I try to be mindful of that, but I have had laproscopic surgery, so I do have some idea of what that entails.


It's almost two weeks after surgery now, and Terry is still talking about pain.  I've tried to have him determine whether it's pain or just discomfort, because the reality is where he has seven incisions on his body he's going to feel it.  But is he feeling real pain, as though something is not as it should be, or discomfort due to what he's been through?  That's the muddy ground we find ourselves on; I thinking he should be feeling better than he says he does, and he thinking I'm not understanding how he feels.  


I just don't have the same affinity for pain killers that he does.  He thinks nothing about taking a pill for pain, as long as it's prescription, but doesn't think about the after effects of doing so.  My concern is the pain pills may mask real symptoms if there is a problem, or that he's taking these because he has them.  I'll just get to the heart of the matter....too often I'm concerned that pain killers are used simply because he has them.  If he truly needs them that's one thing,  but I'm not sure that two weeks post surgery warrants still needing them.


Yesterday he told me that he had so much pain while trying to sleep Saturday night that he got up and took one around 2:30 a.m., and another around 4:00 a.m.  That seems indicative of either a problem which should be addressed and is causing pain, or a problem that he's looking for a reason to take them.  I don't doubt they will help him sleep, but if he can't sleep that may be another matter altogether.  And I'm beginning to wonder if not sleeping is really at the heart of this issue.


I believe we both assumed once his body stopped over producing adrenaline and other hormones, he wouldn't feel "jazzed up" all the time, and sleeping would be easier.  That hasn't been the case.  He didn't get much sleep in the hospital, for obvious reasons.  Being in ICU for five days meant he heard all the beeping, discussions, alarms, alerts, and activity going on around him.  He wasn't getting sleep there unless he was medicated.  But since he's come home he has indicated that he's not sleeping as well as I think he does.  If he isn't getting recuperative sleep, I think he will naturally gravitate to a product that may help him sleep.  


He goes back to the oncologist on Thursday, so we'll see what he thinks about how Terry's doing.  Molly's been taking blood pressure and temperature daily so we can track if he starts to get an increase in temperature that might mean he's got an infection.  So far it doesn't appear he does.  He may just need someone other than me telling him how he's doing and how he should feel.  Fortunately for him (although he might think himself unfortunate as a result) I do not ignore what's going on with him.  He may not like what I say sometimes, but I'm truly looking out for his best interests.  I don't think his best interests involve taking prescription pain killers long term, so I'm going to make sure they deal with whatever is going on to cause him such pain.  And if it turns out it's not pain necessitating the pain relievers, then we'll deal with whatever it is that he's using the pills to alleviate.  As with everything with him, we just need to know.

The Six Million Dollar Man....(well, almost!)

Today was a follow up with the cardiologist.  After all Terry had been through, it seemed like a good idea to have the cardiologist brought into the loop of events, as well as check him out to make sure his cardiac regimen is where they want it to be.  He got some good news when he was told he could get rid a blood pressure med.  Terry never had high blood pressure, but the damage after his heart attack was so substantial that BP meds have been used to reduce the workload in the past.  Now that he doesn't have the heavy influx of hormones and adrenaline, taking those medications have really served to drag him down.  


He had his implant (pacemaker/defibrillator) checked to make sure the settings were where they need to be, and that all looked fine.  While he was there, a rep from the company that manufactured his device was there to do a check on it.  He offered Terry access to a monitor that will be sent to the house, and will use wireless transmission to capture information and send it to the cardiologist regarding how the device is functioning and whether Terry is having any problems that it can be identified.  The info is collected and transmitted every 24 hours, and he only has to be within 15 feet of the monitor.  It's a form of medical telenet care that we will see more of in the future, I'm sure, but for now it will be a daily check on his heart and how often the device is having to work for him.  Very cool technology....very cool.


The doctor he saw was not his regular cardiologist, but was a doctor we've evidently come full circle with in Terry's care.  Six years ago when he had the staph infection in his heart, the doctor he saw today had come down to our local hospital from the hospital in Olathe.  No one had realized how sick Terry really was until he'd been transferred from here to Olathe.  The doctor that helped get the ball rolling on that major medical event was the doctor he saw today.  He recognized Terry's name, and when we reminded him when Terry had last seen him, he was amazed at how well he thought Terry had been doing.  When he heard the latest Terry had been through, he was in amazement.  He said that in his experience as a physician he had never seen a patient with a pheochromocytoma before.  He had heard of it, but had never been part of a care team.  


It's always an enlightening experience talking to medical professionals about Terry's medical history.  When they've heard the latest in particular, about the thyroid cancer and the pheo, you can tell they realize all he's been through.  He takes that licking and keeps on ticking....


The oncologist called and said the initial pathology report showed the lymph tissue had not been invaded, but due to the size of the major mass on the thyroid Terry will definitely have the radiation treatment.  He meets with that doctor next week and we will schedule treatment then.  That gets us one step closer to ending this particular saga.  Correcting hormone levels will be an ongoing issue for a while, but that is manageable in comparison to everything else he's been through.  We are hopeful the days of the puke-a-thons are over.  Time will tell. 

And the Beat Goes On..

While Terry made it through surgery, his recovery may be a little tougher than anticipated.  Part of it is attributed to having two surgeries on the same day, but a more important consideration may be that his body has been under assault from excessive amounts of hormones for years now.  His rest has not been as beneficial as someone with significant heart damage might need, and to compound that by having cancer in his thyroid, which is yet another gland influencing activity levels, and his own body was setting him up to fail.  All things considered, I believe he has responded in a rather heroic manner.


I have tried to explain to the medical professionals who work with Terry that nothing he is ever diagnosed with comes with an easy diagnosis.  His heart attack 10 years ago was undiagnosed until a faxed copy of his EKG was received by a cardiologist at another hospital.  By the time they had determined he was full of infection from a major staph infection 6 years ago, I had taken him to the ER twice, and our primary care physician's office once in one week's time, and he'd had multiple labs and diagnostics trying to figure it out.  They transported him to another hospital so they could see any problems in the back of his heart, and found patches of vegetation in his heart chambers, necessitating open heart surgery and 6 weeks of IV antibiotics.  


Those experiences pale when compared to what he's been through over the past 5+ years.  The vomiting and retching began the day after the 2004 presidential election.  Initially when these events started, he'd vomit for 12, 15, 18 hours or more.  He would hit patches of time when he wasn't vomiting regularly, but never felt well and certainly wasn't getting over whatever he had.  He had referrals to specialists and scopes and blood and lab work, and got nowhere.  But rather than having specialists who wanted to get to the root of his problems, he had doctors who got frustrated when they couldn't figure it out, and tried to put it back on him.  There is no question that Terry did NOT want this happening over and over and over, but it was easier for specialists to indicate he had a hand in whatever was happening, and then they could be finished with it.  There are no words to adequately describe my anger at these doctors who couldn't be bothered to do their jobs to our satisfaction and release Terry from the suffering he endured....for years.  


So, more than 5 years after this all started, and after our entire family had been impacted by Terry's health, we started getting answers.  Finally...but even thinking we had answers didn't adequately prepare us to find out just how long this has been going on.   When his doctor came out of surgery, I learned that the slow growing thyroid cancer he had had been slow growing long enough that there was more than just the one mass on it we knew about.  As a result, the lymph nodes came out, and he WILL have radiation.  The adrenal gland mass, which we hope to find has been the culprit behind the vomiting, had been growing and overproducing for so long that it had actually adhered itself to his aorta, pancreas, and kidney.  HOW does that happen?  How can someone go to multiple doctors, have multiple hospitalizations, and no one knows what's going on with him?


Two days after his surgery his vitals were very unstable.  His blood pressure was 57/43.  His heart rate was 50 beats, and was so irregular that his pacemaker, which to our knowledge has never functioned in pacemaker mode, was working quite a bit due to the irregular beats.  His respirations and blood oxygen levels were all low.  Was it because he no longer had large amounts of adrenaline in his system?  Was it because the physical strain on his already compromised body was all but too much?  I don't know....but I know I spent hours in the ICU watching his monitor doing the most fascinating things.  Fascinating, I suppose, when it's not indicative of potentially negative information where a loved one is concerned.  But I knew he was in good hands, so I tried not to worry.  


Terry's will to survive is extraordinary.  He's been subjected to three life threatening situations in the last 10 years, and despite the odds, finds a way to battle back.  Even with a damaged heart, he finds a way to keep going....he's like a Timex watch.  He takes a licking, but his heart keeps ticking....and aren't we glad?

Quite the Ordeal

It's all over but the recovery...he went IN to surgery at about the time I was hoping he'd come OUT of surgery, but it's over now.  What had originally been stated as a combined 5 hour procedure to remove both glands, actually took 8 hours.  KU Med has a wonderful system in place for surgical nurses to be assigned to waiting areas.  They come out, if not every hour, every other hour to provide updates and information.  It was very comforting to know that even though it was taking longer than expected, we knew what was going on with him.


The oncologist came out around 11:00 last night to fill me in.  He stated the thyroid had more nodules or masses on it than they originally thought.  As a result, it took longer to get it removed than planned.  He didn't give a number of nodes involved, but  did say he had removed lymph tissue.  The complete pathology report will confirm whether it was in the lymph nodes as indicated by the ultrasound by the time of Terry's follow up appointment in a couple of weeks.


For me, the disturbing part of the conversation had to do with the adrenal gland.  Prior to taking him to the operating room, he had a lengthy consultation with the anesthesiologist.  We think he was Russian, as he had a discernible accent, but seemed to be on top of Terry's situation.  We had been told by the oncologist that he would begin with the adrenal gland and then do the thyroid.  The anesthesiologist felt the risk of his blood pressure skyrocketing or bottoming out was very high if they did the adrenal gland first.  He convinced the oncologist to reverse the order of the procedures to provide the least amount of stress to Terry's body.  He did tell us, however, during his discussion that he had done many pheochromocytomas and many thyroid procedures.  He had just never done them at the same time!!  I felt at the time that Terry was in good hands, and now that it's over, I know he was.  Their greatest concern materialized when the adrenal gland was touched, and his blood pressure skyrocketed.  They were prepared, though, so he didn't have any negative ramifications as a result.  Being prepared, and finally acknowledging the pheo made all the difference in his outcome.


The oncologist was very clear in what he told us.  He said the mass in the adrenal gland had been there for years.  YEARS.  He actually went so far as to theorize that Terry might not have needed the pacemaker/defibrillator, and that his irregular beat might have been attributed to the over producing adrenal gland instead.  He wasn't part of the picture when that was going on, so it's understandable that he doesn't fully grasp the magnitude of the damage of his heart attack.  I don't believe the pheochromocytoma caused the need for the implant, but I do find it fascinating to learn all of the "jobs" the different parts of our body have in keeping us healthy and alive.  I had to fight from getting teary when he told us how long the mass had been there.  To know that other doctors had tried to make it Terry's problem when they couldn't diagnose it had angered me at the time, but to fully appreciate all the needless suffering he's been through because the specialists he saw couldn't diagnose it about broke my heart.  We knew it wasn't a mental health issue.  We knew he didn't "want" these vomiting attacks to happen.  


I also talked with the oncologist about how Terry's body finds its way back to normal.  If he's had massive levels of hormones produced and bombarding him every day for years, his system won't know what to do.  I'm hopeful rather than being extremely tired all the time because the thyroid and one adrenal gland are gone that he will actually be able to get beneficial rest, so he won't FEEL tired all the time.  His doctor agreed it may take a while to get him leveled out and working the way he should, but leveling out hormones will be part of the recovery process.


He was only able to say one word to me when I was finally able to see him last night, but he said it twice.  That word was "wow" and it came out deeper and raspier than normal, but I'm sure he felt and meant every inflection of that word.   He had a great little nurse who was working hard to make him as comfortable as possible, which I really appreciated.   You always hope those who care for your loved one when you can't will treat them with the same care and concern that you do.  It was very reassuring to me to hear her say that she knows what she would like done for her in the same situation, so she does what she can to provide comfort.  Brushing his mouth out with oral swabs after his mouth was taped open for the ventilator and dried out was not a major extra effort.  But the comfort it brought to him and his dried mouth was noticeable.  And made me feel very grateful for not being able to do much to help him out at this moment in time.


But today is a better day than yesterday, and tomorrow will be better than today....I just need to keep reminding myself that even with the disability due to his heart, with these other issues corrected, he may actually be able to go places and do things he's not been able to for a while due to pain and vomiting.  To be able to take a vacation with him again....to sit through movies, and concerts and school productions are simple things most people take for granted.   If we simply have a better quality of life it will all be worth it.  It has to....it's what we have left to achieve.  

And We're Off!

Today is the day....we're impatiently waiting for them to come and get Terry and take him to surgery.  He's had a rocky start to the whole process so far.  When we arrived yesterday to check in, they had no record of him or his surgery.  Not a good sign....fortunately I had paperwork with me from the oncologist's office that helped define what was supposed to happen.  After a lunch at the cafeteria, we headed up  to his room.


It was an interesting experience.  Generally speaking, most people do not find themselves at the hospital for an admission 24 hours before their procedure.  He wasn't feeling so bad that he needed to be in bed, so it was a little weird trying to figure out how he was supposed to do things.  My needs included finding out exactly when the surgery was going to occur and which room they were going to move him to for closer observation.  They couldn't answer either of those, which was very frustrating.  The idea of trying to be here at 6 am to be sure I made it before he went in was not an appealing option, to say the least.  He was able to call me last night to let me know which room he was in and that they thought he would go in for surgery at 11.  It is now 11:30 and his nurse just came in to say they'll notify him 30-60 minutes before they come to get him, so he's evidently got a while to wait yet.  The reasoning for moving him closer to the nurses' station was that they were dumping high levels of the alpha and beta blockers into his IV and need to monitor he didn't have any adverse reactions. 


He was pretty nauseous this morning, which surprises us both, I think.  We both thought when the alpha blockers starting working he would not be nauseous, or at least not as nauseous.  Doesn't seem to be the case as he was sick, and very sick with vomiting for the past five days or so.  We both knew that he tended to do worse when he was nervous or agitated, and were hopeful this would take care of that problem.  I'm not sure now what's going to happen if decreasing adrenal production doesn't help with calming him down some.  If nothing else, as a cardiac patient he should be as calm as possible.  He may need to learn yoga if this doesn't help!


It's now almost 12:30 and they're on the way to get him.  Hopefully it will be over soon.....

The Countdown Begins

After meeting with the oncologist yesterday, we have a game plan and date for surgery.  He has to be admitted the day before in the morning, so will have to get him there by 10 am on Tuesday morning, the 8th of June, and they will do additional tests and ensure he's stabilized for about 24 hours before surgery.


He has been on an Alpha blocker for about a week now.  The purpose of that is to diminish adrenal gland production.  He will start a Beta blocker on Sunday in preparation for the surgery.  The Beta blocker will help protect his heart from the reduced hormone production.  He'll have the laproscopic surgery to remove the adrenal gland, and they'll enclose the gland in a "plastic" bag before they remove it.  Once it's out, they'll reposition him on the operating table and begin the surgery to remove the thyroid. 


Because the cancer has spread beyond the thyroid into the lymph tissue on both sides, they will be taking the additional tissue to ensure they have gotten all of it.  I asked about post surgery and whether he'd have to have radiation or chemo since it has spread.  It appears he'll get an easy road for radiation.  He will be given a solution with radioactive iodine beads in it that will gravitate to any sites where thyroid cells have traveled.  The cells will absorb the iodine from the beads and it will kill any cells, reducing the risk of additional metastasis.


Interestingly enough, since KU Med is a teaching hospital, they asked Terry about the potential to keep the adrenal gland and thyroid tissue for future research.  We both thought it was a great idea, even though he was told they will remove any identifying information from the sample before it would be used.  Terry thought if they could get back to him it might be helpful in figuring out in totality what's happening with him, as well as be a resource for others who may have the same condition.


He admitted this morning he's getting nervous about the surgery,  Part of that is he was told there would be a ventilator in use when working on the thyroid.  He remembers the feeling of having it in when he had the open heart surgery six years ago, and thinks the experience will be the same.  I explained to him that when he had the other surgery he was in very bad shape.  He was septic and so sick he was hallucinating by the time they took him in for surgery.  This will be a different situation altogether.  The primary difference is this time around he's fully lucid to understand what it all means.  That means he has time to think about it and worry.  I'm going to have to figure out a way to keep him positive and focused.  I don't want him run down and anxious about what's going to happen because he can't sleep due to worry.  Maybe as the adrenal gland continues to pump out less and less adrenaline it will curb some of the nervousness naturally.


My plan is to be there for the surgery and stay the first night after.  I'll provide updates as they come in since I'll have my laptop with me.  I have every confidence he will do fine and not have any problems, but I know we'll all be glad when it's over and in the past.


Here's to delicate cutting for an optimum outcome!

Are We There Yet?

This week brought us fewer medical appointments, and interestingly enough, possibly more information!  The prostate biopsy was on Monday, the 24th.  The urologist has called to say he did not find a malignancy in the prostate.  He thinks it may be chronic inflammation which is causing his pain.  They will try him on a 6 week course of antibiotics to see if that makes a difference.  


This does make sense, because he didn't have problems with the prostate, and most men are diagnosed because they've started having problems.  There usually is no pain associated with it, as it more often presents itself as difficulty in urination, and that has not been an issue for Terry.  To be told pain is not generally associated with prostate cancer, but to know he was having a lot of pain that was increasing makes it a little less stressful knowing it's not cancer.  Inflammation could be a "good" diagnosis, as anything NOT cancer is the preference.  But as a cardiac patient, I'm wondering what unknown damage chronic inflammation might be playing into his heart condition. I know it can't be helping the cardiac side of things, but it was good news to find they don't think he has more than one type of cancer.


The oncologist also called this week to confirm the pheochromocytoma.  He spoke the words "you were right" and I know it about had to kill him!  Doctors  want to be right all of the time, and probably like it even less when it's a spouse who is telling them how things seem to be.  But since I'm the one with the vested interest to get Terry healthy, I'm going to keep speaking up.  He started on a med that cost $6 per pill, and he had to have 50 of them.  It's a small price to pay if this puts him on the road to recovery.


The next appointment is on June 3 with the oncologist, and we should be able to set the appointment for surgery at that time.  The medication he's taking is taken for two weeks, so hopefully it will be just another week after that appointment and then he gets rolling!!!  We're far, FAR from finality with all of this, but at least it's starting to feel like we've at least headed down the road.

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Oh, The Tangled Web We Weave...

This feels like it's starting to work its way toward a plan.  There is still too much unknown for my comfort level, but at least we know that by a month from now he SHOULD have one surgery completed, with one to come.  At this point, it may work out exactly opposite the way they originally indicated they wanted to address the masses.  Go figure....


I know that there have to be times when Terry thinks I have too much to say to the doctors, but I hope in the long run he realizes that I truly am only trying to keep them on task where he is concerned.  Today was yet another example of feeling like it makes a difference that I'm there.


The adrenal gland mass is a source of concern as far as Terry and I are concerned.  We both think based on the way he feels, and the symptoms they list as a consequence of having the pheochomocytoma, that he does.  The oncologist has seen two labs, one showing an increase in hormone production, and one that was less conclusive.  From his perspective, based on a 50/50 with the labs and the fact that Terry did not have high blood pressure that there really wasn't a pheo at work.  He didn't dispute the mass, but didn't think it was functioning in the absence of high blood pressure.  


Terry has an ejection fraction of 20%.  The oncologist is not familiar with Terry's cardiac history, so I felt compelled to ask with an ejection fraction that low, was it even possible for Terry to HAVE high blood pressure.  He agreed that was not a likelihood.  I asked if he had seen labs that had been processed through our primary care physician's lab.  He had not.  So the report that the PCP, the local surgeon, and Terry and I have seen showing all hormones tested outside the normal range has not been seen by anyone from KU Med. 


This continual dance of one step forward and two steps back is getting very wearisome.  From my perspective, when the oncologist's office called to verify the thyroid cancer, I told the doctor's nurse that the surgeon had this concern and had attempted to contact him.  Evidently they still had not communicated.  I do know if the pheo exists that it would have been determined by the time surgery got scheduled.  The day of his prostate biopsy they have a nuclear scan scheduled to check out the adrenal mass.  By raising the issue of his ejection fraction and the other labs he has not seen, the oncologist had some blood drawn before we left KU Med today, and Terry was in possession of the infamous orange urine jug.


Now, if the results of the blood and urine work ups show the adrenal gland mass is functioning, he won't have to have the nuclear scan scheduled for May 24.  He will have to take an alpha blocker to reduce adrenal production, and a beta blocker to protect his heart, for two weeks prior to his surgery.  By determining this before the prostate biopsy, he should be able to have surgery sooner.  I asked if the thyroid could be removed at the same time the oncologist removes the adrenal gland mass, and he believed that could be accomplished.  The benefits of that are only two surgeries and recoveries rather than three.  Right now it's looking like that first surgery can happen early in June.  


The bad news, and there always seem to be some, is that based on the ultrasound done prior to the thyroid biopsy there are lymph nodes on both sides of the thyroid showing mass.  The oncologist says there will be a pathologist in the ER to check tissue until all cells are clean, but I'm concerned this means there will be a need for chemo and or radiation now.  I know he was hoping, and I was hoping I know, that he wouldn't have to go that route.  Now we just need to find out for sure about the adrenal gland mass and the prostate.  That's all... For now....that's all.  

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!

Seriously???

Aaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrggggggggggggggggg!!!  Now that I have that off my chest.... 


This is getting more convoluted as the process wears on.  Terry met with the surgeon who is going to do his colonoscopy yesterday, and he put an entirely different spin on this than the oncologist has.  It's becoming more and more difficult to accept what we're told because it keeps changing.  I just want them to know without a doubt what we're dealing with, so we CAN deal with it.


This is what we thought we knew:  Terry has a total of three masses.  One in the prostate, one in the thyroid, and the mass that started it all, in the adrenal gland.  He met with the gastroenterologists last Tuesday, and they talked about the need to focus on the prostate, as the adrenal mass was determined to be non malignant.   When he met with the oncologist two days later, he confirmed that the prostate was the primary concern.  He would be referred to a urologist for follow up with a biopsy.  


So, he met with the surgeon yesterday, and he was VERY enlightening.  From HIS perspective, the immediate issue is the functioning adrenal gland tumor.  While it's not malignant, which is evidently why the oncologist wasn't concerned, it is functioning, and may be overproducing the hormones which may have led to the thyroid mass.  Lab results from blood work they did showed elevated levels of multiple hormones, so there is no question to the surgeon that the adrenal mass is functional.  I'm not sure why the gastroenterologists and the oncologists didn't catch it, but I'm thankful he did.  He was able to tie things together as no one else has.  The scary part, but he didn't seem to be concerned about, is the fact that Terry may legitimately have 3 different issues going on.


He believes the prostate cancer and the thyroid cancers are not related.  Meaning he does not believe the thyroid metastasized from the prostate, but is a separate cancer from the prostate.  I'm not sure at this point that I find it more reassuring than not that he might have multiple cancers at the same time, as well as a malfunctioning adrenal gland.  The ray of hope in all of this is that where the cancers have been located so far, the glands themselves can be removed.  They can remove the prostate, the thyroid, and the adrenal gland.  I would assume that potential and opportunity does not always present itself.  


I want to believe we are moving in the right direction, but can't shake the concern about the pain he's had for so long.  We've had lots of conversations lately, and he understands I do not want what we ultimately find to be a terminal condition for him, further reducing his life span.  But I do feel it's my responsibility as his wife to make sure they haven't missed anything.  Until they tell us they're 100% confident they've located and removed all cancers, and treated anything else that can be to make him feel as comfortable as possible, I'm not willing to back off and breathe any sighs of relief.  Trusting doctors has not worked very well for him in this particular situation, so until we're officially through this situation, I remain on high alert.


This morning was the biopsy on the thyroid.  In 3-5 days he should have results back.  We'll have a better idea then if the local surgeon has figured out what the other doctors and professionals have not.  All we want is answers and treatment.  That's not asking for much.  Is it??

Can We Change Our Order, Please?

After literally years of not knowing what was wrong with Terry, we may finally be on to something.  The scary part is now that we are learning, the inclination is to want to go back to the days of ignorance and frustration when we were clueless.  


Now, after three weeks of knowing there was a mass in his adrenal gland, we are finally confronted with the "C" word that each family dreads.  Today the use of words like "inconsistencies" and "mass" and "abnormality" were replaced with the word "cancer."  And even though he had willingly and openly been talking with me about the possibilities of what he was facing, when he met the reality of that possibility, it was obvious he had hoped the news would be different.  He became very quiet once we left, and trying to force meaningless chit chat just for the sake of doing it seemed wrong.  I know how far away in thought I'd have been, and knew it was a lot for him to process.  


We still don't know a lot, but this is what we know.  It is pretty certain there is prostate cancer due to enlargement, increased PSA reading, PET scan result, and physical examination.  There is also a nodule on the right lobe of the thyroid that showed metabolic activity during the PET scan.  He needs to have biopsies of both locations.  The mass in the adrenal gland that started all of this did not show activity during the PET scan, and even if it had, it is still too small for them to deal with at this stage.  It is less than 2cm, and may have to get closer to 4 for action.  


Today was the beginning of figuring out what is going on and what he needs.  But unless things change, he won't see the urologist who will do the biopsy, until May 10.   Not that he will have the biopsy on May 10.  That's when he sees the doctor who will DO the biopsy.  Even though the oncologist explained the procedure today, and why he needs to have the biopsy and not just rely on the other markers was covered as well, he still has to have a conversation with the other doctor.  It's hard not to see this as more delay, when there has been so much delay already in his diagnosis.


The purpose of the biopsies are to show the stage and aggressiveness of the disease.  We were told prostate cancer metastasizes FROM not TO the prostate, so they need to make sure this is the primary location.  He is still on track to have a colonoscopy, so hopefully they aren't going to find that it's gone anywhere else.


While I've always believed information is power, I may have to stop doing research and looking into what this all means until we have more complete information.  I still maintain I'd rather be prepared for the worst, and hear the better news, than the other way around, but I'm reading too much and learning too much and it's a bit overwhelming.  And scary....I need to walk the tightrope of trying to understand what we're in for without falling the long fall of "what if?"...that fall is too, too far down....and we're just starting to inch ourselves out onto that rope.  We have to be steady for now.  It's hard to believe we wanted to know all of this not so long ago....

Wake Me When It's Over

Today is the day we've both been anticipating and dreading. Today is the day for the PET scan. While we know we won't learn anything before we leave, we do recognize this is the step we need to take to know what we're dealing with and what options are available.

And I realize I use the word "we" a little lightly. I'm not the one going through the tests and dealing with a potentially alarming diagnosis. But I am with him as he goes through all of this, and know that it will impact me as well. I do think I'm mentally prepared for whatever comes our way. Since his heart attack 10 years ago, I've lived with the reality that he may not be here to grow old with me. This is not a new thought process. But everyone keeps telling me to think positively....and while I try not to worry unnecessarily about things, I do try to think in realistic terms of what is happening. I'm not sure I know or appreciate the value of telling myself nothing's wrong and he'll be fine only to find out otherwise. My own personal philosophy is prepare for the worst and hope for the best. I'd much rather prepare to be told what we don't want to hear and then not hear it, than bury my head in the sand and learn things were much worse than expected. But that's just me.....

So, for now, we'll spend the next week trying to act as though nothing is happening, until we're told otherwise. That week will give me the time to figure out in my own head how I'm feeling about what's going on. I know I need to be ready to deal, whatever we're told....part of that will be figuring out what I'll need to do to make things as easy and positive for Terry as I can. Even if the news we get is better than expected, there's STILL something going on with him that needs to be diagnosed and fixed. The challenge will be keeping him from getting too down from continuing to deal with this. When you've felt crummy as long as Terry has, the last thing you want to hear is that yet one more time, they don't know what's happening to him. Even bad news at this point would be an answer. This not knowing is not working.....

Thanks For Nothing....

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.

Be Careful What You Wish For

Tomorrow (today) is the appointment with the oncologist. No matter what we're told, it will be a double edged sword. If the mass is malignant, at least we finally know what we're doing with. That's bad, but it's good. If it's benign, then we're back to square one with not knowing what the problem is. That's good, but it's bad. It's really hard to know what I should want to be the outcome.

I do know the pain he's feeling is happening more often, and at times with more intensity. The nausea has been diminished, and he hasn't had a full blown vomiting episode for three months now. We've tried to make the point that even though it's been 5 1/2 years since this started, the vomiting is not our primary concern right now. The pain is. It would be nice if someone was looking at the big picture, rather than than piecing him out by specialty.

It's been a sleepless week, and I think it's knowing about this appointment that's doing it. I just want it to be over so we don't have to wait any longer. But knowing either answer does not bring relief and comfort does not bring me much relief or comfort at the moment. We'll get through it. We always do.

How To Be Heard...Or Die Trying

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.

We May Be On To Something

After beginning with the Internal Medicine Dept at KU Med Center, Terry had his first appointment with the gastroenterology side of things. Once again, we met with a third year intern, and again, he was interested and inquisitive and for the first time we felt heard.

He did have some ideas to pursue, and this is really the first time we've had any type of hypothesis about what's happening. Results of the CT Scan he had at the last appointment at KU Med showed a mass in the adrenal gland. They aren't sure what it is, and will be referring him on to possibly an endocrinologist. They will also do a CT Scan of his head to look at his sinuses, but also to look for the potential of a brain tumor. On the bright side, the doctor did say if there is a tumor, the likelihood is that it is benign. If it were malignant with as long as Terry's had the vomiting problem, he would be dead by now. Yay.....

Additionally, they will be checking for steroid levels, specifically the hormone cortisol. There will also be a four hour stomach dumping test, and a blood test which would indicate if it is vagel nerve related. The intern spoke of potential causes for the vomiting, and concluded his conversation with us by talking about cyclical vomiting, which is not diagnosed as to the cause. They do all the tests to rule out potential causes, and when left with nothing, term it cyclical vomiting.

After feeling optimistic for the first time in a long time that we might actually be making some headway, the supervising physician began by talking about cyclical vomiting. Terry had stressed with the intern that it was primarily pain now that was the issue, and not so much the nausea and vomiting. To begin the discussion with us by talking about having a condition with an undetermined cause felt like he was following a blueprint of diagnostic tests that they all follow.

I could feel myself becoming increasingly frustrated and irritated by this physician. We explained that much of what he was recommending, Terry had already been put through. I told him we needed to do something different if we were going to figure this out. So, to a certain degree, what I was trying to avoid with repetitive testing that was always negative was what he was going to experience. If it gives us the answers we need, it will be worth it in the end, but I can tell I'm losing patience with not knowing why he goes through this. The increased pain and disclosure that they've found a mass in his adrenal gland is making me think that this may be something that should have been, and could have been found much sooner.

I'm hopeful that's not the case and we're finally on track to find out the cause of his pain and suffering. I know we're both weary of living like this.

You Gotta Have Heart

Today was the appointment with the cardiologist. Dr. Brown has been the cardiologist since the major staph infection in Terry's heart in 2004. He's been equally frustrated with Terry's refusal to take his meds. He told him last summer that in his experience, patients who did not take their medications for 2 1/2 years or more had a 50% higher mortality rate. Terry has not taken his heart medications since February 2007.

Dr. Brown looked at the results of the last ECHO he had, which was in July of 2009. He said there had been a decline in his ejection fraction, down to 20-25 from 25-30 at the one prior to that. Now...when he had that test last July, I didn't accompany him to the appointment. Big mistake...BIG mistake....

He came back from that ECHO telling me the ejection fraction had been at 30-35, and the technicians who ran it told him everything looked great and he should keep doing what he was doing....when what he was doing was nothing. And I remember feeling frustrated at the time that despite his lack of attention to his own health, he was being given validation that he was doing everything he should.

That was negated today when we learned that he has had decreased function for the last two scans he's had. He's been so consumed with his nausea and pain that he's completely lost track of the fact that he's first and foremost a cardiac patient. He does not see the forest for the trees, even though it feels like I'm yelling "timber!!" on a regular basis. It confirms for me that making the decision to back away from work is the right decision. I think I have my work cut out for me.

Getting Started

Finally....I go back to work next week, and we're starting to get somewhere at KU Med. He had an appointment today, and because he had been feeling nauseous when we left this morning, had not eaten anything. Since he was not feeling well at the appointment and complaining of pain and discomfort, they were able to schedule and conduct a CT scan while we were there. After such a long wait the last time we were there, it was nice that this clicked along the way it did. He was able to go from the doctor's appointment straight to radiology for the test.

He also got a couple of prescriptions to hopefully calm any spasms down to see if that's the cause of the pain. My concern, and evidently Terry's too, is that the pain is increasing. It's frustrating because while we are starting the process with this department at KU Med, they are starting from scratch. We've already scratched....we need to do something different and outside the box where diagnostics are concerned. I thought we had articulated that from the beginning, but I suppose each physician feels the need to validate for himself.

I'm still encouraged he's not been sick enough to require hospitalization while I've been off. I really can't figure that one out. He's obviously not felt well almost every morning, and that's been apparent. So what is the difference with whether this goes full blown or dies down mid-morning, as it has done? I have no clue...the only other variable may be the weather has been so cold that it may have diminished the impact of the changes in weather that typically have filled his sinuses and drained down his throat. Without that additional trigger, he may keep from sliding into a full day or more of vomiting.

I wish I could figure it out, so we could stop it from getting to that point. It's hard to keep something from happening if you don't know how it starts. At least we're finally getting down that road to figuring it out....