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.

1 comment:

Robert said...

I am keeping you in prayer Josh. Do let me know if I can do more.