Control of your medical treatments depend on approval with insurance.

Terry had a follow up appointment last week with the surgeon and the doctor who handled his chemotherapy during his treatment for bladder cancer. He had a chest x-ray, abdominal scan, and lab work before meeting with each of the doctors. The results from those tests were good. His numbers regarding blood work are starting to return to more normal levels. The x-ray and scan did not reveal anything, so from that perspective they felt it was good news.They also commented that they were almost 100% confident the nodule in the lymph nodes is not bladder cancer. Unfortunately, until he gets approval through Medicare for the test he needs to figure out if it is a recurrence of the thyroid cancer or not, we return to waiting limbo.

Although most of the information from the appointment was positive, he has lost another 2 pounds, bringing his grand total to 20 pounds he’s lost during this ordeal. For some people, losing 20 is a good thing, but for Terry, he was not carrying any extra weight to begin with, so losing what he did is very noticeable. The problem for him is a nausea which is almost always present to some degree or another. When he feels too nauseous he doesn’t want to eat, and when he does eat he’s eating smaller amounts. None of that adds up to weight gain. His doctor went ahead and prescribed two medications for him. One was a prescription sleep aide, and even though he still does not sleep straight through the night without getting up, he feels as though he falls back to sleep faster.

The other prescription was for an appetite enhancer. The drug Marinol is a synthetic version of the active ingredient, THC, in marijuana. He’s been prescribed it, and we’re on the fourth day of waiting for approval for the pharmacy to fill the prescription. He has a 12 year history of chronic illness, has completed chemotherapy and a rather nasty surgery, and the powers that be question whether he needs this drug or not. So, on the one hand he’s waiting for Medicare to approve the drug series he needs to see if the thyroid cancer has returned, and on the other hand he’s waiting for his Medicare plan drug benefit to approve a medication that might actually reverse the nausea and weight loss he’s suffered. After reading the side effects listed I’m not sure he needs to take it even if it’s approved. This is yet another example of the synthetic version of something natural not resembling the original version at all.

I’m finding it very disturbing that he has to wait until Medicare will approve a test he needs to determine whether cancer has returned. This is the first time he’s ever had to have a prior approval for anything related to his Medicare covered care. He has his supplement and his drug benefit, and we’re seeing a waiting period for the two needs he has. One is a diagnostic and one is a prescription. I’m not so worried about the prescription because I’m not even sure he’ll want to go ahead and get it when he reads the side effects and other considerations, but I want them to find out what’s going in his lymph nodes. The cancer he had in his thyroid was slow growing. But that was the first one. Hopefully if it is cancer again it’s the same slow growing type. Even better would be finding out it’s not cancer at all. He’ll have to have some authorization occur for that to happen.  So we wait….

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At the time of the thyroid cancer in early 2010, the mass that was discovered on his left adrenal gland was eventually diagnosed as a pheochromocytoma. This pheo is typically diagnosed in conjunction with high blood pressure, which as a cardiac patient with significantly damaged heart tissue, Terry does not have. He does have a history of a pheo now, so I suspect they will monitor that in his future. It turns out they’re monitoring it now, and the lab specimen came back with an abnormal reading. She wants him to do the 24 hour urine collection specimen again, which is much more reliable as an indicator. I hope she is coordinating that with the doctors he will see in May for the bladder cancer.

Even more unexpected, and the real sucker punch to the news was that they discovered a nodule on his lymph nodes when they did a sonogram of his throat. That cancer had not been a fast growing cancer, and had not been present in the lymph nodes when the thyroid was removed. Now that he’s had the subsequent diagnosis of bladder cancer I don’t suppose we can assume it’s thyroid cancer, if it turns out to be another malignancy. We don’t know anything for sure at this point, but we’re both pretty sure there shouldn’t be anything there.

On May 11 he has an x-ray, a scan, labs, and two doctor appointments. I’ll contact the endocrinologist’s office this week to see if there’s anything that can be coordinated with them that can be done at that time. We won’t know anything for sure about anything until well after that, so it will be another waiting game. Those are never any fun, and when you weren’t expecting to play the game to begin with, it seems even longer than it is.

Terry’s expression when I conveyed the information from the phone call said he was not happy with the news. I worry about him if this is the new trend for us…if he can’t get ahead with one medical issue before a repeat medical issue starts demanding attention again, it’s going to be an even tougher battle. I’m trying not to get ahead of the situation, but we were not anticipating the potential for bad news. We realize and acknowledge that he will have to go through lots of diagnostic testing in the future to ensure nothing bad is making a comeback, but given the type of thyroid cancer it was we didn’t expect a recurrence. And we don’t know that it is. We just know how it should be. It should be nodule free. We’ll soon see.

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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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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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As is always the case in the teaching hospital where he has been treated, we see the resident before we see the doctor in charge.  But before she came in, the aide got his vitals information, including his medication list and what he was currently taking.  Based on what she was told about a blood pressure medication he takes, a pharmacy tech came in to speak with him as well.  Terry does not have, and has never had high blood pressure.  He has been prescribed various blood pressure medications over the years ever since his heart attack.  The intent of one of them was to access the beta blocker capabilities, and one of them worked to reduce the workload on his heart.  While she got various information about his medications, she also asked some questions related to his pain and sleeping.

Terry has never slept well.  He doesn’t sleep longer than two hours, either at night or during the day.  This has not changed with the latest surgery as a treatment for bladder cancer.  I explained what he’s tried over the years and that he has never had a prescription for a sleep aide.  She told us we should speak with the doctor when he came in.  The resident came in before the doctor, told us she had spoken with the pharmacy tech and informed Terry he should make an appointment with our primary care physician for a prescription for something to help him sleep.  We had already acknowledged the PCP got all of the reports that were in Terry’s medical record, but were told Terry should make a separate appointment with him to obtain what we were discussing in the exam room.

It occurred to me that we were dealing with one of the problems with health care today.  Doctors specialize, and when they specialize they neglect to deal with the total body.  They focus on their specialty and what impacts it, and disregard everything else.  Why should Medicare and his supplement be charged for another doctor’s visit, which probably would have included lab charges, when he was sitting in a doctor’s office at the time?  Doesn’t it make sense that the doctor he sees makes a determination and provides documentation to the primary care physician so he’s in the loop?

When the pathology report post surgery showed that the tissue removed was cancer free (as far as they could tell), it became a point of contention for me.  I didn’t understand why they hadn’t done a scan to see how the cancer was responding to chemo, and were moved forward with the same plans that had been laid out even before chemo started for surgery on Terry, and aggressive surgery at that.  Why wouldn’t they want to ensure they weren’t unnecessarily removing someone’s internal organs before doing so?

The resident acknowledged that Terry’s response to the chemo was not standard.  Even though he had only received 75% of the treatments they had originally ordered, the cancer had retreated enough that they could no longer find it.  Now, in full disclosure, I had looked online at some information with his pathology report in hand.  It confirmed the strain Terry had was aggressive, and the only eventual treatment was removal of the bladder.  I wasn’t saying he wouldn’t have had the surgery, but I am saying he might not have had to do it for months, allowing him to live a more normal lifestyle.  From my perspective, he didn’t have to undergo such a dramatic surgery quite as soon as he did.  It was a quality of life issue.

When the doctor came in he let us know the concerns about quality of life had been reported back to him.  I explained that for someone like Terry who had already lost so much physical capacity to various illnesses this was one more event that had impacted not only his, but my quality of life for the rest of his life.  The doctor sat back, turned to Terry and explained what would happen at the next appointment, and then turned to me.  He said we could address quality of life issues at the next appointment.  It was too late to be of benefit to Terry, but if we have at least triggered a thought with him he’s never had before, it may lead to a different way of interacting with patients.  We can only hope.

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A week ago Terry noticed when he stood up he was getting wet.  It was easy to assume at first that the bag was leaking, or in the first instance, which occurred when he got out of the shower, was water he hadn’t gotten dried off.  You try to make excuses or explain what you think is going on when you really don’t know.

Of course, neither of those were the cause.  At his follow up appointment two days ago with the surgeon we learned creatinine levels were rising after lab results were provided.  Creatinine increases show a problem with kidney function.  As as a result of the labs and the leakage, they sent him for a sonogram to look at his kidneys.  The sonogram tech who did the test was concerned enough by what she was seeing that she took multiple pictures of the same area to send to the physician while Terry was still there.  She thought he might want to keep Terry there based on what she saw.  Evidently the doctor did not share her concerns, and sent him home.

This whole experience has served to further ding his quality of life with problems we didn’t anticipate he would have, so we were woefully unprepared to address.  Now the guy who doesn’t have a bladder, and has a hole in his abdomen that drains urine into a bag, is wearing incontinence briefs because he has urine pooling in his abdominal area that drains when he stands up.  There’s no real opportunity to deal with the changes that have come with having his bladder removed, because the leaking is an immediate problem that has to be addressed.  I’ve told Terry he’s going through more clothes than a newborn right now, except his clothes are so much bigger it doesn’t take long before a load is gathered for the washer.

During this description I have been referring to the liquid drainage he has as urine.  When at his doctor’s appointment on Friday he was asked if he could provide a sample.  He filled a specimen cup more than 2/3s full with a yellow liquid that sure looks like urine.  I will be extremely surprised if the analysis comes back as something different.  When it first started and I called the urologist on call, I was told it was not uncommon for the body to retain fluids during chemo and the stress of surgery that could have started being released during the recuperative period.  As long as he wasn’t running a fever or vomiting there was no need to be overly concerned.  It seems so much better an option to wait until those problems have presented themselves to deal with it…

For now the waiting game of figuring out what they’ll do and when they’ll do it begins.  I just know I’m tired of Terry having a tougher time than necessary yet one more time.  And he is as well.  This is taking a mental toll on him, which does not help him get better.  We thought getting better was the name of the game.  Turns out it’s the waiting game again instead.  We certainly are familiar with that one.

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They took him to the operating room around 7:30, and I got word the first incision had been made just before 9:00.  The nurse liaison was good about letting me know it would be a slow  and tedious surgery due to the use of robotics, but gave periodic confirmations that all was going well in surgery.  At 4:15 the surgeon came out to tell me he was finished and all had gone well. He was very pleased and gave me a broad overview of what to expect over the next few days, and told me Terry would be in recovery for about two hours.

At 7:45 they came to get me as they were moving him to his room.  He was in bed in the hallway, and I was so glad he wasn’t alert enough to notice the change on my face.  There was no color in his face anywhere.  None in his lips, or cheeks, or even on his head.  His eyes were so swollen they were small slits in otherwise puffy eye sockets.  There was an arterial line in his neck, and his throat and jaw area on both sides were swollen as well.  He did not look like Terry, and it was a shock to me to see him like that.

He was moved to a room by the nurse’s station, and once he was settled with what he needed they were able to bring in a chair for me that folded out into a bed.  It was nice we were able to have our own space together and I could be there without it being a problem.  The nurses and aides were great about taking care of him and asking if I needed anything before they left each time.  It was reassuring to feel that I wasn’t in the way, and they didn’t mind I was there.

It was amazing to watch Terry’s transformation day by day.  I never dreamed he’d be ready to go the Sunday following his surgery.  They did give him two units of blood the day after surgery.  That gave him some color, energy, and strength to start getting around.  The nurse came in on Friday after his surgery on Tuesday to do  training on the new urostomy he now has for urine elimination from the body.  The bladder is gone, so there had to be some reconstructive work to do to replace it.  He had not dealt with it, or even looked at it before the nurse came in for training.

I had planned to go home that night, and that idea was validated when I watched his face as she uncovered his stoma for the first time.  He had a look that said that could not be part of his body, and that he wanted no part of it.  I really felt he needed some space that night to process what his body had endured.  Since then he has accepted the changes and permitted the science teacher in him to reappear.  As a result, that part of his personality seems dominant during this experience.  He’s exploring it as a medical marvel rather than a limitation of his body.

He’s had some additional complications such as leakage that he feels he can control the flow of, just like urine.  It shouldn’t be, and they tell us it’s not, but it was a surprising twist to the whole ordeal.  I’m sure we’ll look back on this sooner than I think we will and laugh at how some of it all transpired, but for now some of it’s not very funny.  And having Terry feel as though he’s incontinent when he’s been through such tough surgery is not funny.  Not yet, anyway.

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Watching Terry this afternoon I think it’s a good idea that he has one less day to worry.  He has paced and walked and paced some more around the house.  It was a rainy drippy day, so going outside wasn’t an option.  I really hope he gets some good rest tonight, as he’s going to need it.

We had a gathering this weekend, and it was fun to have friends and family around to take our minds off the impending surgery.  But I can’t really say we didn’t think about it, because we were talking to one person or another about it all evening.  Everyone is concerned, and their support is indescribable.

I made a request of friends to light a candle on Terry’s behalf tonight.  Each time they see that light I want them to envision a healing warmth surrounding him and protecting him from harm.  It’s a simple thing for people to do, but it provides an easy answer when asked what they can do to help.  And it really does help.

The knowledge that we have friends and family members giving us their support through prayer, positive energy, and good thoughts makes such a difference.  It helps reinforce that we are not alone in this.  I’m more concerned about this surgery than I have been for other medical events he’s endured.  A diagnosis of stage 4 cancer is never good, but their claims of confidence it hasn’t spread don’t comfort me and won’t until I hear from them after surgery that they did in fact get it all.  Had it not gotten to this point I might have more confidence.  For now I am sad and I am mad that it did.

The challenge tonight will be getting sleep when I know what we’re getting up to do.  I can only hope that this is the last time we’ll have trouble getting to sleep because of an impending and invasive procedure to save his life.  We’ve been here too many times already.  It’s time to start a new trend and have nothing medical happen for a while.  Would we know what to do?  Probably not, but I’m ready to find out.

So keep a good thought and a prayer close for him.  He’s got a really big hill to get over before it starts getting easier.  Until I post updates, I want to articulate my thanks one more time for the support.  We’re going to do all we can not to need it anymore!

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During our conversation the anesthesiologist joked with Terry that I was feisty.  I told him we had decided the fact that I speak up for him is in good measure why he is still here after all he’s been through.  He laughed and said the devil didn’t want to deal with me so he was letting me keep Terry a little longer.  I think I liked that comparison.  But I think in this case the cancer is the devil, and I am definitely trying to get Terry as far away from that particular devil as I can.  I will do all I can to fight that fight and see Terry come through it all one more time.

It’s hard not to be nervous about what is coming for Terry.  While he has a tremendous will to live, his body is getting battled out.  He has not bounced back the way we both had hoped he would from the chemotherapy.  I keep reminding him that they told us how aggressive they treated him, and how harsh those drugs really are to your body.  I want him to always feel like he’s doing what he can to beat this, even when he’s feeling physically spent.  He’s been through so much already, and has fought hard each time it’s been required.  I tell him when he’s through he’ll be the latest Six Million Dollar Man.  He just won’t be in quite the same shape as the other one!

With surgery one week from today on the 22nd, the countdown to no cancer has officially begun.  We’re ready for him to be cancer free, and for his head to be covered in hair again, and for his body to adapt to the newest changes the surgical procedure will bring.  It’s one more adventure for us to see through, so we can come out on the other side of the experience in better shape than we went into it.

It’s time to stop talking about it, and start doing it!  This will be the last Thursday he has a bladder.  Tomorrow will be the last Friday.  Here’s hoping the day gets here quickly when we look back on this as one more story we can tell about how Terry won the battle one more time.  That’s not asking too much.   Lest we forget, cancer sucks…

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His dad died of cancer that Terry tells me was colon cancer, but encroached into the colon, as opposed to starting inside.  He felt his dad never fully recovered from the surgery to remove his colon and once he had an ostomy bag to deal with it began a slow decline, ending with his death.  I’ve heard from Terry prior to his bladder cancer diagnosis that after witnessing what his dad went through he never wanted to have to deal with an ostomy bag.  The description of both procedures indicated having the bag is going to be the better option for him.

Once they remove the bladder, prostate, and lymph tissue, they will remove a section of small intestine.  If he was going to not have a bag, that tissue would be used to create an artificial bladder, or as they refer to it, a neo-bladder.  The downside of that option is that due to the tissue used to function as a reservoir, there is no sensation of urgency, and he would have to empty it every two hours.  That means even at night he would have to wake up, get up, and empty the neo-bladder.  Not an attractive option for someone who has enough difficulty sleeping as it is.

A second issue is that the tissue from the intestine that would be used for the neo-bladder develops mucus.  That mucus could plug up his reservoir, and he would have to perform a self catheterization and he is NOT interested in doing that.  For me the bigger issue is the two hour drain schedule for the other option.  He will never get his strength back if he cannot rest.  Sleeping is a difficult enough proposition for him, so he truly does not need any additional difficulties there by being forced to get up every two hours every day.  His surgeon says he will be able to swim and do activities he normally would be able to do with the ostomy.

His chemotherapy treatments are finished.  He should have had the last one last week, but once again could not due to blood levels.  He was low on several counts, but the white cell count was virtually non-existent.  He was at extremely high risk to get an infection, and had to stay away from people and away from public spaces as a result.  The benefit to that is it will give him an additional week, and minus a treatment, to start getting his strength back for surgery.  It’s going to be a hard surgery on him, and the better shape he’s in when he starts will hopefully mean better shape when he’s finished.

His date for surgery has been set for February 22, which will be here before we know it.  Neither of us are looking forward to it, but we are looking forward to it being over.  And I’m looking forward to getting the Terry I know back.  Treatment has been really tough on him so far, which necessitated missing 2 of his scheduled 8 treatments.  He has no color, and his bald head make him look so much older that it’s hard to remember it was just 3 months ago when he still looked like himself.  He won’t be the same when it’s all over, but at least he’ll look like himself again.  If nothing else, I think it will help us to move on.  When he looks like himself he won’t look like he does while he’s sick.  It may just be a visual trick, but I’ll take whatever we can get.  I just want him here, and healthier.  That’s all.

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