I was humbled the other day by my six pound cat. Walking into the kitchen at a quick pace combined with him running through my feet led to me hitting the kitchen floor. Hard. It happened so fast I didn’t … Continue reading
Terry had his surgery to repair his hernia a few days ago. Given all he’s been through, this was relatively minor, but has certainly waylaid him since. As is usually the case, while it went pretty much according to plan, … Continue reading
Now that summer is ending we’re heading into a busy period of medical appointments for Terry. When it’s all said and done I believe the month will simply be a blur in passing as we move from one specialist to the other.
He saw the local surgeon last week about the abdominal hernia. He confirmed my suspicions that it was his intestine dropping into the weakened area of his lower abdomen. Terry had been reading some forums that indicated hernias were not uncommon after abdominal surgery. He had it diagnosed several years ago, and while it hadn’t been problematic then since the surgery it had become painful and extremely swollen. We had even ordered a special hernia support belt for him to wear. The surgeon wanted to fix it as soon as possible, but knew he had other diagnostics that were already scheduled. We’ve now added to the appointments he already had, so once the appointments are completed he will have an outpatient surgery to repair the hernia.
Tomorrow he has labs and scans and appointments with the doctors who did the chemotherapy and the surgery for the stage 4 bladder cancer. He still hasn’t gained weight back so I’m sure they’ll ask about that. I’ll be anxious to hear what they have to say. I’m hoping they’ll have good news. Good news would be greatly appreciated!!
The following Wednesday we’ll head to the main hospital. He’ll go through admitting and then get an injection. It’s called a thyroglobulen stimulating hormone. He’ll have this shot and then go back the next day and repeat it. The day after the second shot he will have labs and a radioactive dosing that he will swallow. Three days later I’ll take him back one more time and they’ll do another scan trying to see if there are any thyroid cells still showing up in his system. He should have no thyroid cells since they removed the thyroid due to cancer. If there are stray cells showing up, they may be what’s forming the mass that they’ve found in his throat. We’ve waited several months for approval to do this test, and had I not called again he might still be waiting. We need to know what he’s dealing with right now.
Once all of those are done and finished, he’ll have surgery to repair the hernia. By that point the month of August should be just a reminder that it’s almost September. I know it’s no fun for him to have to go through all of the diagnostics, but it’s no fun for me knowing what he’s doing, and why he’s doing it. I wish for both of us that he could get just a small break and heal and improve his health before having to deal with more problems. Or better yet, it would be nice to not have any problems for a while!
Enjoy your August…I know there’s fun to be had out there somewhere!
It seems as though Terry may have plateaued with getting any healthier post surgery for stage 4 bladder cancer. It’s been more than four months now, and there just don’t seem to be any changes in his physical condition. No … Continue reading
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.
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.
Terry is making his round of post surgery doctors’ visits after surgery in February for stage 4 bladder cancer. The last appointment was three days ago, and was with the physician who had been in charge of administering and monitoring the chemotherapy. It took five hours out of our day, and had us wondering on more than one occasion why we were there.
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.
It’s been two weeks since Terry returned home after surgery for stage 4 bladder cancer. The first week at home was good, but there was an interesting development the second week. I say interesting, because I’m still trying to stay positive, but these surprises are getting harder and harder to get through.
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.
Terry hit the two week post surgery mark today after undergoing aggressive surgery for stage 4 bladder cancer. In many ways the weeks have both flown by, and dragged on. Time has flown by since getting home, but the time in the hospital seemed to tick, tick, tick to a slower beat than normal. He was there for five nights and six days, and I was with him for all of it but one night when I went home to sleep in my own bed. Needless to say neither of us got any rest while in the hospital and came home exhausted.
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.