The hold music blandly seeps into my brain as the monotonous repetition makes me lose track of the time spent on hold. It's been over 10 minutes by my phone's count. And this is the second time I've called. The first time I got tired of waiting at 15 minutes and hung up. Wait a second. What am I doing on hold? I have a long white coat now. I hang up, redial and listen to the automated now familiar menu electronically read through my phone into my car speakers. "If you are a physician, please press 1." I press 1. In less than 5 seconds a courteous individual cheerfully answers the phone. "Hello, this is Dr. Isaac and I'd like to check if a patient's abdominal CT scan have been officially read by the radiologist yet? Name and DOB are....Yes? Thank you, sir. Have a good weekend."
I fight rush hour traffic to make it to the imaging center to get a copy of the CT report. MY CT report. I've looked at the images myself and I can't see anything that jumps out at me. No renal growths. No GI growths. On the bones I see my abnormal spine but no sign of metastases. But I'm not as good at reading CTs as I am MRIs of the spine. I especially am not good at picking up enlarged lymph nodes. There's a reason radiologists make the big bucks. So I want to know the official read. NOW. It's Friday afternoon and I don't want to wait the weekend to know if there is some solid tumor I somehow missed. I breathe a deep sigh of relief as I quickly scan the results. IMPRESSION: benign abdominal CT.
Ruling out a renal adenocarcinoma is a big deal as it could present exactly like the way I am presenting. And it's a nasty malignancy, not that there's really any good cancer.
July 30, 2015
July 12, 2015
what is it?
When you hear hoof beats, think horse, not zebra.
- common saying in medicine
The logic behind this saying is that common things are common. So if you are in Texas and hear hoof beats, odds are very high that it is a horse and not something exotic. But what if what you hear does not resemble hoof beats? What if the results don't fit anything typical or common? That is the situation I find myself in now.
On a routine blood test called a CBC (complete blood count), I had abnormal results. So my doc and I figured, let's wait three weeks and make sure it's not some fluke. It wasn't. The results repeated. Given that even the doctors involved are puzzled by this finding, you'll forgive me if his explanation is not entirely clear but I'll do my best.
1- I have a high number of red blood cells (RBC). These are the cells that carry oxygen throughout your body. Too many and your blood starts to get thick and viscous which makes the pump, aka your heart, work harder. So it's not something you want to blow off. There are multiple conditions that can cause this, including one of my medications.
2- Though I have more RBCs, the individual ones are significantly smaller and more pale. Why? It means they have less of the oxygen carrying molecule derived from iron called hemoglobin. The conditions I alluded to above that cause increased RBCs do NOT typically cause this type of response. It's starting to get weird now because the condition that typically causes this is called thalassemia. But that's a genetic condition that's present from birth. Mine just popped up now. There is a very rare acquired thalassemia and it is essentially a boe marrow disorder on par with cancer.
3- The amount of total hemoglobin is normal which implies that I'm NOT anemic. However, the individual amount of hemoglobin in each RBC is low. So mathematically, 10 RBCs with 10 hemoglobin molecules in each is a grand total of 100 hemoglobin molecules. But 100 RBCs with only 1 hemoglobin molecule in each one is still a total of 100 hemoglobin molecules. Confused yet? You should be.
4- even though my hemoglobin is "normal" my total iron stores are profoundly depleted. Now it's starting to get really confusing. Most doctors, even the smart ones are scratching their heads by this point. What depleted my iron stores? Do I have a GI bleed? Is there a tumor using it up? Is the out of control growth of the RBCs using it up faster than I can replace it?
5- I have an elevated white count. Now it really starts to get confusing. An elevated white count is usually a sign of something like a serious infection or trauma going on - pneumonia, sepsis, appendicitis, severe trauma like a car wreck. Or, cancer. But I'm walking around doing normal day to day stuff. I'm not laid up in a hospital bed. It's most certainly NOT associated with an elevated red count due to a medication.
So there is no horse in these hoof beats. It is a zebra no matter what. It might even be an eland. The top two diagnoses that are being ruled out are both statistical anomalies. Both options are being pursued concurrently and this is a GROSS oversimplification.
1- stop the potentially offending medication. This will not be fun or easy. I am against doing this but the oncologist and my family insist. I'd prefer a much lower dose but I'm not supposed to self treat. By stopping the medication, though, it is the quickest way through the mud. So the doc has a point. Stop it and see if the abnormal CBC resolves. If it does, ipso facto, it's the drug. And if it is, it's potentially worth publishing as a case report as it's unheard of. This is the more desirable of the two outcomes, obviously. But we don't get to pick.
2- start the cancer work up. Test my blood for some common mutations that could cause some blood cancers that may be presenting atypically. Get a CT scan of my abdomen to ensure there are no gastric or renal tumors that could also present like this. And finally, a bone marrow biopsy to make sure there are no physical, genetic, or chromosomal abnormalities present. If these are all clean, then it'd take cancer off the table. If not.....well, I'll jump off that bridge if and when that's where my road takes me.
So I get picked, poked, and prodded, not to mention a high tech image of my innards and some high tech analysis of my genes and chromosomes. And though I am exceedingly grateful that I am at the world's largest medical center and have the connections to move through it like water, I still wait nervously like any other human being.
- common saying in medicine
The logic behind this saying is that common things are common. So if you are in Texas and hear hoof beats, odds are very high that it is a horse and not something exotic. But what if what you hear does not resemble hoof beats? What if the results don't fit anything typical or common? That is the situation I find myself in now.
On a routine blood test called a CBC (complete blood count), I had abnormal results. So my doc and I figured, let's wait three weeks and make sure it's not some fluke. It wasn't. The results repeated. Given that even the doctors involved are puzzled by this finding, you'll forgive me if his explanation is not entirely clear but I'll do my best.
1- I have a high number of red blood cells (RBC). These are the cells that carry oxygen throughout your body. Too many and your blood starts to get thick and viscous which makes the pump, aka your heart, work harder. So it's not something you want to blow off. There are multiple conditions that can cause this, including one of my medications.
2- Though I have more RBCs, the individual ones are significantly smaller and more pale. Why? It means they have less of the oxygen carrying molecule derived from iron called hemoglobin. The conditions I alluded to above that cause increased RBCs do NOT typically cause this type of response. It's starting to get weird now because the condition that typically causes this is called thalassemia. But that's a genetic condition that's present from birth. Mine just popped up now. There is a very rare acquired thalassemia and it is essentially a boe marrow disorder on par with cancer.
3- The amount of total hemoglobin is normal which implies that I'm NOT anemic. However, the individual amount of hemoglobin in each RBC is low. So mathematically, 10 RBCs with 10 hemoglobin molecules in each is a grand total of 100 hemoglobin molecules. But 100 RBCs with only 1 hemoglobin molecule in each one is still a total of 100 hemoglobin molecules. Confused yet? You should be.
4- even though my hemoglobin is "normal" my total iron stores are profoundly depleted. Now it's starting to get really confusing. Most doctors, even the smart ones are scratching their heads by this point. What depleted my iron stores? Do I have a GI bleed? Is there a tumor using it up? Is the out of control growth of the RBCs using it up faster than I can replace it?
5- I have an elevated white count. Now it really starts to get confusing. An elevated white count is usually a sign of something like a serious infection or trauma going on - pneumonia, sepsis, appendicitis, severe trauma like a car wreck. Or, cancer. But I'm walking around doing normal day to day stuff. I'm not laid up in a hospital bed. It's most certainly NOT associated with an elevated red count due to a medication.
So there is no horse in these hoof beats. It is a zebra no matter what. It might even be an eland. The top two diagnoses that are being ruled out are both statistical anomalies. Both options are being pursued concurrently and this is a GROSS oversimplification.
1- stop the potentially offending medication. This will not be fun or easy. I am against doing this but the oncologist and my family insist. I'd prefer a much lower dose but I'm not supposed to self treat. By stopping the medication, though, it is the quickest way through the mud. So the doc has a point. Stop it and see if the abnormal CBC resolves. If it does, ipso facto, it's the drug. And if it is, it's potentially worth publishing as a case report as it's unheard of. This is the more desirable of the two outcomes, obviously. But we don't get to pick.
2- start the cancer work up. Test my blood for some common mutations that could cause some blood cancers that may be presenting atypically. Get a CT scan of my abdomen to ensure there are no gastric or renal tumors that could also present like this. And finally, a bone marrow biopsy to make sure there are no physical, genetic, or chromosomal abnormalities present. If these are all clean, then it'd take cancer off the table. If not.....well, I'll jump off that bridge if and when that's where my road takes me.
So I get picked, poked, and prodded, not to mention a high tech image of my innards and some high tech analysis of my genes and chromosomes. And though I am exceedingly grateful that I am at the world's largest medical center and have the connections to move through it like water, I still wait nervously like any other human being.
July 10, 2015
resolve
"Nay, I will not walk backward in life," said Turin.
- Children of Hurin by JRR Tolkien.
We step out of the elevator on the 29th floor looking for the correct office suite. But it is not hard to find as it takes up the entire 29th floor. On the wall is an unmistakable sign but I only see one word. Oncology. A lump in my throat takes hold, I take a deep breath and then walk in followed by my wife and parents. We are at an oncologist's office. A cancer doctor. Again. Is it cancer? Is it something less ominous? We don't know yet. But it is beyond the realm of a family doctor.
This role is foreign to me. Fate has placed me squarely time and time again in the role of doctor/caregiver of family members. But what do I do when I am now the patient? It was the doctor side of me that got me quickly in to see an oncologist. It was the doctor side of me that reached out to colleagues and had three separate opinions before I even met the oncologist. In the room, I can't help but ask about certain tests. But the patient finally had his say. I tell the doctor my family history and can see the grimace on his face when with my eyes turning red but my voice firm, I then say, "so when I had an abnormal and bizarre result.........it scared the shit out of me."
- Children of Hurin by JRR Tolkien.
We step out of the elevator on the 29th floor looking for the correct office suite. But it is not hard to find as it takes up the entire 29th floor. On the wall is an unmistakable sign but I only see one word. Oncology. A lump in my throat takes hold, I take a deep breath and then walk in followed by my wife and parents. We are at an oncologist's office. A cancer doctor. Again. Is it cancer? Is it something less ominous? We don't know yet. But it is beyond the realm of a family doctor.
This role is foreign to me. Fate has placed me squarely time and time again in the role of doctor/caregiver of family members. But what do I do when I am now the patient? It was the doctor side of me that got me quickly in to see an oncologist. It was the doctor side of me that reached out to colleagues and had three separate opinions before I even met the oncologist. In the room, I can't help but ask about certain tests. But the patient finally had his say. I tell the doctor my family history and can see the grimace on his face when with my eyes turning red but my voice firm, I then say, "so when I had an abnormal and bizarre result.........it scared the shit out of me."
July 8, 2015
the past
Waiting with the Sword of Damocles potentially hanging over you generates a lot of fears, especially when one has endured what I have experienced. So I went back to the past me, to see if he might have anything to say. He did, indeed. I wrote this of my brother four years ago in the summer of 2011, almost to the day, shortly after he had passed away. What will I do, indeed?
pain
pain
My brother experienced severe pain. A LOT of pain. Pain was what sent him to the doctor where he received his death sentence. So from his diagnosis until a few hours before he died, pain was ever present. I can hear people's minds running, "if that was me, put me out of my misery. I don't want to suffer." Nobody wants to encounter that kind of pain. Even our dad, in the midst of fighting his own grim battle told me that he will not suffer like that. He will elect to die. But my brother did suffer. A large part of y'all may think that was due to a failure on the part of the medical establishment. Maybe. If so, then I would share some of that blame. I accept that if it's true but I believe it to be more complicated. I replayed the scenario over in my mind. Over and over and over. His grimaces, his walk hitched up short by the tumors present in hips, his limited range of motion of his shoulder, his grunts at the end when he could no longer talk. I see these in my mind's eye like they were yesterday. I'll carry those scars with me the rest of my life. My own pain, though of a very different beast.
At every doctor's visit, he had to rate his pain from a 0-10 scale. 0 is no pain. 10 is the worst pain of your life. It's a standard way of assigning a quantification to a subjective quality like pain. He NEVER rated his pain a 10. I finally asked him, "what would it take to be a 10? You look like a 12 from where I'm sitting."
His reply? "I think of some soldier who has his leg blown off and is bleeding out. That's a 10 to me. I don't have that so I'm not a 10."
"Wow." That's the only response I could muster. Trying to explain how that soldier would be high on adrenaline and shock to blunt the response was useless. He was clearly in severe pain. But not a 10 to him. It was that simple. When a pain spike hit, he would reach for tylenol, freakin' over-the-counter tylenol at "extra strength". He'd do that before reaching for morphine.
"That's like shooting a bb-gun at a tank," was my clinical advice. "I take more when I get sore from backpacking."
Not wanting to fail him, I strongly suggested that he try an antidepressant to assist in managing the pain. There was data at the time that some of them could blunt musculoskeletal pain, similar to the type of pain that he had. Cymbalta has subsequently been approved by the FDA for pain, regardless of depression status. His response to me? "I don't want to take a happy pill."
So why was he in pain? Did the doctor fail him? Did I fail him? I don't believe so. The reason was two-fold. First, he disliked medicine. He took so many pills who could blame him for getting sick of all the side effects. Pills, pills, and more pills. But bigger than that, he never accepted his diagnosis. He never reached that stage. He refused to. When someone close passes, there's a natural inclination to only remember the good things about the person and gloss over the difficulties. There's a temptation to turn the memory into a myth. The eulogy can become a mythology.
But my brother was human. He was a good man, but as human as the rest of us. He had his own weaknesses and shortcomings. Pain was a result. Was it strength that kept him fighting and consequently in pain? Or, was it weakness at an inability to come to terms with his impending death? Harsh words, perhaps. I feel I earned the right, though, to be able to ask them. In all honesty, I don't think it's that black and white. He was in pain because he fought. He fought because he wanted to live. He wanted to be with his family. He also couldn't accept the inevitability of his diagnosis because he wanted to live. Because of that, he was gone from his family a lot while he was receiving treatment. Some of that treatment at the end would have been considered medically futile, in my estimation. But he still did them. Lots of shades of gray in there. Strength. Weakness. Will to live. Acceptance of death. Do those terms even mean anything anymore? Perhaps they are two sides to the same coin.
So I ask those same questions of myself. What would I do? How much pain could I endure? How much strength would I have? What weaknesses of mine would be exposed? What would any of us do? And could anyone be faulted for making their choice? After witnessing his struggle and suffering, I am not so quick to make a decision for myself, or for anyone else. For him, it came down to this. He chose pain in exchange for wanting to live.
At every doctor's visit, he had to rate his pain from a 0-10 scale. 0 is no pain. 10 is the worst pain of your life. It's a standard way of assigning a quantification to a subjective quality like pain. He NEVER rated his pain a 10. I finally asked him, "what would it take to be a 10? You look like a 12 from where I'm sitting."
His reply? "I think of some soldier who has his leg blown off and is bleeding out. That's a 10 to me. I don't have that so I'm not a 10."
"Wow." That's the only response I could muster. Trying to explain how that soldier would be high on adrenaline and shock to blunt the response was useless. He was clearly in severe pain. But not a 10 to him. It was that simple. When a pain spike hit, he would reach for tylenol, freakin' over-the-counter tylenol at "extra strength". He'd do that before reaching for morphine.
"That's like shooting a bb-gun at a tank," was my clinical advice. "I take more when I get sore from backpacking."
Not wanting to fail him, I strongly suggested that he try an antidepressant to assist in managing the pain. There was data at the time that some of them could blunt musculoskeletal pain, similar to the type of pain that he had. Cymbalta has subsequently been approved by the FDA for pain, regardless of depression status. His response to me? "I don't want to take a happy pill."
So why was he in pain? Did the doctor fail him? Did I fail him? I don't believe so. The reason was two-fold. First, he disliked medicine. He took so many pills who could blame him for getting sick of all the side effects. Pills, pills, and more pills. But bigger than that, he never accepted his diagnosis. He never reached that stage. He refused to. When someone close passes, there's a natural inclination to only remember the good things about the person and gloss over the difficulties. There's a temptation to turn the memory into a myth. The eulogy can become a mythology.
But my brother was human. He was a good man, but as human as the rest of us. He had his own weaknesses and shortcomings. Pain was a result. Was it strength that kept him fighting and consequently in pain? Or, was it weakness at an inability to come to terms with his impending death? Harsh words, perhaps. I feel I earned the right, though, to be able to ask them. In all honesty, I don't think it's that black and white. He was in pain because he fought. He fought because he wanted to live. He wanted to be with his family. He also couldn't accept the inevitability of his diagnosis because he wanted to live. Because of that, he was gone from his family a lot while he was receiving treatment. Some of that treatment at the end would have been considered medically futile, in my estimation. But he still did them. Lots of shades of gray in there. Strength. Weakness. Will to live. Acceptance of death. Do those terms even mean anything anymore? Perhaps they are two sides to the same coin.
So I ask those same questions of myself. What would I do? How much pain could I endure? How much strength would I have? What weaknesses of mine would be exposed? What would any of us do? And could anyone be faulted for making their choice? After witnessing his struggle and suffering, I am not so quick to make a decision for myself, or for anyone else. For him, it came down to this. He chose pain in exchange for wanting to live.
July 6, 2015
fear
“False hopes are more dangerous than fears.”
- from Tolkien's Children of Hurin
The phlebotomist struggled to find a vein willing to give up any blood. Under normal conditions, they need not even use the tourniquet. I just pump my fist and arm a few times, the vein pops right up, the needle quickly glides in, and that symbol of life pours out into the tube. But now, it is different. A tourniquet. Both arms. Multiple veins. Bruises from all the repeated sticks. She queries, "are you dehydrated???"
No. I am not. As soon as she hits a vein, I can tell that something is wrong with the life flowing through my veins. It is thick and oozes into the tube as if it were molasses syrup. And at that moment, I know the abnormal blood result seen three weeks earlier is a true result. I do not need to see the lab report to know that both the red and white cells are elevated. Again. I tell my wife that the result repeated as we got into the car. She refuses to go down that road. Wait for the results. Even then, you don't know what it IS, so don't start saying everything it COULD be. But after so many battles, I am a weary, war torn soldier and I refuse to acknowledge hope. Again. Instead, fear remains.
- from Tolkien's Children of Hurin
The phlebotomist struggled to find a vein willing to give up any blood. Under normal conditions, they need not even use the tourniquet. I just pump my fist and arm a few times, the vein pops right up, the needle quickly glides in, and that symbol of life pours out into the tube. But now, it is different. A tourniquet. Both arms. Multiple veins. Bruises from all the repeated sticks. She queries, "are you dehydrated???"
No. I am not. As soon as she hits a vein, I can tell that something is wrong with the life flowing through my veins. It is thick and oozes into the tube as if it were molasses syrup. And at that moment, I know the abnormal blood result seen three weeks earlier is a true result. I do not need to see the lab report to know that both the red and white cells are elevated. Again. I tell my wife that the result repeated as we got into the car. She refuses to go down that road. Wait for the results. Even then, you don't know what it IS, so don't start saying everything it COULD be. But after so many battles, I am a weary, war torn soldier and I refuse to acknowledge hope. Again. Instead, fear remains.
July 3, 2015
deja vu
The scene appeared all too familiar. A sense of building rage, anger at the arbitrary nature of it all. I flashback to the scene in my mind. It is not hard to recall. As sweat streamed from every pore, I stared in the mirror of the small gym gazing at my own eyes trying to see what, or if any, mettle lay behind them. Then, it was to judge if I was strong enough for my brother. Today, the concern is drawn inward instead. I am the object of uncertainty now. I am the one who waits with dreaded anticipation. For me. Something is not right with my body. And I do not know what it is.
Subscribe to:
Posts (Atom)