Getting to the Gists Of the Matter

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

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

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

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

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

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

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It’s All About the Baby Steps

It’s been about seven weeks so far since Terry’s surgery for stage 4 bladder cancer.  While for almost any other procedure seven weeks would be long enough to be recovered, for this type of invasive and dramatic surgery, he’s still weeks, if not months away from complete, or at least as complete a recovery as he’s physically able.  He saw the surgeon who did his surgery last week, and he confirmed he still has a way to go.

But every week is a little better for him, and this week he even managed to get on the lawn mower.  He didn’t last long on his first ride, but doing it in small batches allowed him to get it all mowed on his own.  While I was happy to have the grass, that never really quit growing during our mild winter mowed, I was even happier that Terry felt he could do it.  For him, it was proof that he’s starting to get some strength back.  Given everything he’s been through, that’s saying something.  His hair is starting to come back in, and like Sampson, he seems to derive his strength from his hair.  It’s a visual validation he’s getting better.

I was talking to his sister today about what full recovery may mean for him.  She said she’s hopeful when it’s all said and done he’ll feel like a new man.  I understand her enthusiasm, but his reality is probably going to limit just how new he feels.  He has substantial damage to his heart from a massive heart attack; his thyroid is gone due to cancer; and he’s down one adrenal gland.   Add in getting his abdominal cavity rearranged, and he’s been through the proverbial wringer.  All things considered, it’s amazing he’s able to get out of bed every day.  So every day he does gets him that much closer to whatever recovery is possible.

The doctor who oversaw the chemo had him scheduled for a three month check at which point they would do labs, scans, and chest x rays.  For reasons we’re not quite sure of, the surgeon does not want to wait that long.  He’s moved it up almost six weeks, which is probably not a bad thing, but it is a curious thing.  I think he’s finally on board with the understanding that nothing with Terry is easily done.  Either the diagnosis, the treatment, or the recovery turns out to be problematic.  For now, we aren’t going to worry about it, because he sees the cardiologist and the endocrinologist before he goes back to the urologist.  Getting those “gists” in at once!  It would be too much to ask for good reports all the way around, but we’ll work towards that.

For now, every day he is trying to do more is to his advantage.  He may not be able to be who he once was, but it’s time for him to be who he’s going to be now.  That’s a challenge he’s up for, and his baby steps will get larger in getting him there.

 

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Doctor, Doctor Give Me the News

Terry had a follow up appointment with the cardiologist two days ago.  Dr. Brown has been really good about seeing him more often post thyroid cancer and pheochromocytoma, so it was a chat about how things are going.  It truly is hard to know how much those two separate conditions played into his overall cardiac health, so I have appreciated the additional visits with him.

It has been frustrating, however, that he has not been willing to consider how the nausea and vomiting that have occurred for almost seven years might be tied to his cardiac condition.  After some discussion regarding theoretical causes, he was willing to consider a problem with either a blockage or potential limited blood flow to his intestinal system.  Dr. Eck, his endocrinologist, has supported that idea with us, so we were able to secure a referral for a dye contrast scan to look at blood flow.  

He gets that scan on Tuesday, the 10th of May.  That gives us the opportunity to get those results to KU Med for his appointment with the GI department the following week.  It was the vomiting that prompted the referral to KU Med last year, but once they found the other problems the vomiting issue went to the bottom of the heap.  Discovery and treatment of the two conditions last year did not have the additional benefit of eliminating the nausea and vomiting, so we have hopes this test may yield information.  There has to be a physiological cause.  End of discussion.  Just because they have not determined what it is yet does not mean it is not real.   

All things considered, his cardiologist is pretty encouraged he’s doing as well as he is.  Terry did admit to him, and had not admitted to me, that he’s noticing he’s getting winded and needing a break if he’s out in the garden or trying to work on something for 30 minutes or more.  There have been several times when I felt he was breathing harder than usual, but he always minimized any concerns.  Listening to him confess to the cardiologist confirmed what I’ve noticed.  He’s not having much swelling to his hands or feet yet, so I hold onto that piece of good news while we have it.  

While it won’t surprise me, it will be disappointing if we find out his nausea is a by product somehow of his cardiac disease.  I realize everything he’s gone through has been difficult to diagnose, which I reminded Dr. Brown, but I have pushed hard on the cardiac side of things for answers for a while now, and we could not get any doctors, much less the cardiologist, to consider the connection.  As long as we finally get some answers I’ll forgive him if it turns out to have a cardiac component.  We just need to know.
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