6/22/19 I Don’t Know

I don’t know,” said Hemocastle as to the diagnosis of Myelo’s pain and other symptoms.

After several CT scans and Ultrasounds, Surgeon Two Lips declared, “There are several things that I know that are not wrong with him, but I don’t know what is,” adding, “But I see nothing that requires surgery.” This was a relief to us all.

Several doctors decided that they needed to do a lumbar puncture to rule out meningitis. Hemocastle overruled them all, deciding that Myelo was already getting the required antibiotics and steriods that would be given to him if meningitis was diagnosed. Since he was getting the treatment they would prescribe, there was no real need to undergo the risks of the lumbar puncture, especially since Myelo was on Plavix, a blood thinner, and things could go wrong without much provocation. So, Myelo was getting prophylactic treatments that would be about all they could do in the even of a concrete diagnosis.

We still don’t know what is wrong with him,” said Hemocastle, knowing that there were several things wrong with him, but not knowing what the immediate cause of his symptoms were.

Myelo’s ferritin level was very high. In the emergency room, as they drew blood, I had instructed the ER doctor that he should order a ferritin test, as I suspected that Myelo’s iron level was completely out of whack, due to the number of blood transfusions he had received over the past six months. The ER doctor blew me off. I am not accustomed to being blown off by anyone, much less a doctor who does not know.

We typically don’t order those type of tests here in the ER. That is something that hematology will decide to do later. We don’t use that information for anything. We don’t this. We don’t that. We don’t … blah… blah … blah.” With that he turned and walked out of the room. To his credit, the next morning, the results of is blood tests did show a ferritin level, which means the ER doctor had ordered the test in spite of himself. What the test revealed was surprising. Myelo had a Ferritin level of 9,640 ng/ml. The high side of normal is 300 ng/ml. Myelo’s was more than thirty times higher than a high normal.

If one cares to read about symptoms of iron overload, one might determine that they also suffered from it. Nausea, digestive problems, joint pain, arthritis, diabetes, irregular heartbeat, and many others. They are of such a general nature that anyone reading the symptoms might easily diagnosis himself with the same. It could be easily done.

Dr. Touchheart came in with his usual questions, “Do you have pain in your chest? Shortness of breath?” Upon getting a no, he seemed to be through. He s a good, caring doctor, but I am continually nonplussed at any specialists inability to look beyond the scope of their specialty, to try and get a glimpse of the big picture. Some make a half-hearted effort, but most stick to their specialty, as if there is some rule that prohibits them from looking at anything else. I suppose they spread the insurance money all around. If this sounds cynical, well, I am a cynic.

Myelo’s creatinine and uric acid levels were also very high, so nephrology was called in because we all wanted to avoid dialysis. Myelo himself had earlier stated that he was never going to go through dialysis again.

Dr. Nephro said,” Dialysis beat him up pretty bad last time, so we want to get his kidneys back to a good functioning level. He still seems dehydrated to me, so we will increase his IV fluid intake level. Hopefully, a dose of rasburicase (a miracle kidney drug made of bird shit) and the increased IV fluid levels will do the trick.” Nephro was right: dialysis was rough on Myelo. We did want to avoid it becoming necessary. As to the other things that might be wrong, Nephro was only interested in his kidneys.

I spoke to Hemocastle about Myelo’s super high ferritin level. He got a grim look on his face.

The only acute way to decrease iron levels in the blood is to bleed the patient. In Myelo’s case, it is not an option. The other way is iron chelation therapy, which takes months to start showing any results and iron is only chelated out of the body very slowly. In Myelo’s case, this is not an option, either. If we don’t give him the blood transfusions, he will die. We will try to deal with the symptoms of his iron overload, but no doubt he is suffering from many them. He is in a tight spot.”

This is not the first time I have heard of Myelo’s tight spot. He has been in a tight spot since he was diagnosed back in December. Tight spots seem to follow him around. I have seem tight spots come and go, coming with increasing frequency, and lingering, not going, as they should. Tight spots are like bad relatives who come for a visit and won’t leave.

Heavy narcotics were not having the desired effect on Myelo. They just did not seem to be able to let him rest comfortably. I often heard him groan in his sleep, when he was able to sleep. Dilaudid and morphine usually knocked him right out, but this time, he stayed awake staring at the ceiling, not even wanting to watch the TV with captions on, which is his usual habit. When he did sleep, he lay flat on his back, neck hurting so bad he could not bear to have anyone touch it, and moaning in pain when he did sleep.

I don’t know,” said Hemocastle.

I don’t know,” said Two Lips.

I don’t know,” said the ER doctor.

I don’t know,” said Touch Heart.

I don’t know,” said the hospitalist, the one physician who should have a desire to get the big picture, to coordinate the patient’s care among all the other physicians, looking at all the things the specialists don’t look at, trying to connect the dots as the dots seemed to be there, unlinked, unassimilated, uncoordinated, disjointed.

Myelo’s wife and I tried to connect the dots. We were no better at it than the doctors, but we could see them. We were continually saddened by the fact that the dots seemed to be of little concern. It’s the spaces between the dots that can kill a fellow. Even though the doctors in Meridian could not connect the dots, the doctors at UMMC were no better at it, and they were there to do just that.

Myelo’s wife noticed this one evening. She merely took the TV remote control out of Myelo’s hand. She slid it out of his grasp. His response was this, “I wish there was some way I could tell you just how incredibly painful that was.”

Without any movement of his joints, the only thing that could have caused that to be intensely painful was nerve pain. This was related to Hemocastle, the only doctor that seemed at all interested in the big picture. A low dose of gabapentin was ordered. The effect was remarkable. Myelo’s pain just nearly disappeared. He began to decline narcotics when it was time, or they were offered, saying he no longer needed them. His nausea subsided, and his appetite began to return. He showed nearly instant improvement. In one single day, he went from an unbearable neck pain to only the memory of something recently painful.

The cause of his nerve pain?

It could be an of several things.” said Hemocastle. “The subsidence of his pain? It could be the gabapentin, the steroids, the antibiotics, the sum of those things, the body having mounted its own successful defenses. Pick one. Pick them all. Maybe none of them.”

The doctors seem to be comfortable in the realm of not knowing.

Myelo’s wife and I don’t know, either. As lay people with no medical training whatsoever, we are far more qualified to not know than the doctors. Our not knowing is more thorough, more complete than theirs. When the doctors want to not know something, they should be comfortable consulting with us so we can steer them towards a very rewarding, highly proficient level of not knowing. They should be able to tell their peers, with confidence, that they have gotten the best advice available for not knowing. It makes one think that physicians who don’t know should approach know-nothings like us carefully and respectfully. We can not know with the best of them.

Of course, any physician would like to have the definitive answer, to instantly know the thing that once defined can be instantly treated, resulting in the complete and swift recovery of the patient. But medicine does not work that way; medicine is practiced. So much of the practice of medicine seems to be to treat the patient for a thing, see if the patient improves, then assume the right track has been taken; if not, treat the patient for something else and see if the patient gets better. There is no silver bullet, most of the time, or seldom, rarely, perhaps never.

Maybe it’s this way. Maybe not. I don’t know. Neither do the doctors.

We can all not know together.

©2019 Mississippi Chris Sharp

PS: There is a Facebook group, a closed group, called CLL Support Group. As a member of this group, I have learned that there are several people there who have both CLL and MDS. Hemopsapien told me that he was fortunate not to have any people with these dual cancers as patients. Hemocastle indicated that some of his patients treated for other cancers had developed MDS as a result of their treatment. May God especially bless those with both CLL and MDS, and also bless those who treat them. Cancer is a perilous business. Even the successful treatment of cancer can be perilous.

Me? I have nothing to complain about!

6 thoughts on “6/22/19 I Don’t Know

  1. Perhaps you might want to make copies of this post and attach a copy to his chart.
    Each of his doctors need a personal copy to refer to on occasion. Thank you Chris for your excellent post.


  2. My, how common this not knowing is. Several years ago, when they admitted mother for some awful pain she was having, the hospitals had all kinds of specialists come through there and all kinds of tests and treatments. He was going to send her home when I insisted that there was something wrong and she couldn’t be just sent home without knowing what it was. I had come from Texas, once again, to be with her because something was terribly wrong. Finally, they needed to do a colonoscopy on my 90+ year old mother. They didn’t get the job done so I had to stay and help her prep. It was done and yes, they finally knew something. Colon cancer! That not knowing is harder for me than the knowing. At least you know then what can and can’t be done to heal. Most of the time.
    I pray that this bit of knowing helps him heal. My Love and Prayers for you all!


  3. We all feel the same way. It’s remarkable how much energy we expend trying to make others feel better about our illness. Sometimes we just need some space.

    The people who know and love us want us to be well. They want to hear good news. We want to reassure them and ourselves. Sometimes the best answer is, “Today, I am OK.” They will learn, eventually, not to press you about tomorrow.

    Lymph nodes wax and wane. They seem to have a plan of their own. Mine have been docile until recently, when they seem to have enlarged substantially. They are sore and tender in places, but beyond noting that, I will think no more of them TODAY.

    Blessings and Peace to you, Laura, cousin of Jeff.

    If you are on Facebook, there is an excellent closed group called CLL SUPPORT GROUP. Most FB groups are filled with trolls. Not this one. The community serves each other admirably.


  4. I am Jeff Atwell’s first Cousin . He told me about your blog . I was diagnosed 2 years ago . Sometimes I don’t know
    Like my stomach aches , am I hungry ? I don’t know . Why ? I don’t know etc
    I try to live in denial thinking next Dr visit it will be gone . I have my first swollen lymph node and I’m waiting for it to go away . Is this normal for CLL patients ? Thank you for your blog . I know I’m not alone , but I am afraid to own it . I fight everyday to act normal for my family and my clients.


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