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.

OttawaHerald.com -- Community News. Community Connections.

OttawaHerald.com -- Community News. Community Connections.

Posted using ShareThis

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!