Monday, November 19, 2018

Diagnosis


I know that many friends and family have been following along with us during this last week as Dwayne was admitted to the hospital a week ago on Monday (11/12), and numerous tests were scheduled and completed. From the beginning, the two doctors assigned to him were a nephrologist (kidney doctor) and hematologist / oncologist (blood / cancer doctor). This made sense because the blood work that we had had done at LabCorp about 2 weeks ago were presenting questionable values on some of the kidney values, and his hemoglobin (iron) was very low (anemic), and when I had bad anemia a few years ago, I was sent to a hematologist / oncologist -- it seems that hematologists are often also oncologists.

From about Wednesday, words such as "leukemia" and "lymphoma" started being used, but the diagnosis was not yet complete. The thing that did not "fit" was the abnormally high lactic acid value. When environmental factors were taken off the table (Dwayne had been in the hospital for 48 hours, so if there was something in Miss Doozie causing the issue it should disappear, but the lactic acid numbers were continuing to be high even while away from the environment of the bus, so something else was producing lactic acid), they used "doctor's google" and found that there were a few incidences of a male with leukemia in the 60+ age range presenting initially with very high lactic acid. The "engine" that goes out of whack and starts creating the cancer cells may also be creating lactic acid cells. The hematologist told us that they needed to be sure that it was leukemia, and the blood flow study should move us toward certainty in that diagnosis. She assured us that leukemia was a treatable chronic disease, and just like high blood pressure or diabetes, it requires medication to control it.

When the blood for the "blood flow study" finally got to the analysis lab, the doctor there immediately identified that she would need a bone marrow biopsy to know the source of the abnormal cells in the blood. There were abnormal blood cells and abnormal lymphocytes. I don't think this was explicitly said, but my understanding was that it could be that the abnormal blood cells caused issues in the lymphatic system because the lymphatic system usually carries waste products away, or it could be that abnormal cells in the lymph system could cause an issue in the making of the blood cells -- the bone marrow would give the information needed to determine which was the causal factor.

So, the bone marrow biopsy was completed on Friday. While Dwayne was gone from the room for the biopsy, I was told that it was usually 24-48 hours before the results of the biopsy would be known. The sample was sent (I think to the same analysis lab and same doctor who analyzed the blood flow study). She called the hematologist very quickly and let her know that, instead of leukemia, she was pretty certain that it was a non-Hodgkins lymphoma called Mantle Cell Lymphoma.

Side note: Hodgkin was a physician who first identified that cancer could start in the lymphatic system. If I understood/remember correctly, he identified 8 kinds of lymphoma, and his analysis indicated that the lymphoma spread by passing from one lymph node/system to the next in an orderly pattern. Later, it was found that some lymphomas pass outside of an orderly pattern, which were then named "non-Hodgkins lymphoma".

The hematologist talked with us about this on Friday... she let us know that the diagnosis was not yet certain, but it was certain enough that she wanted to go ahead and schedule Dwayne for insertion of a port-a-cath - a device that could be used to administer IV treatments (chemo) and also to draw blood. She was pretty certain that this was going to be required, regardless of what the final diagnosis would be. We were kind of glad to hear of this as Dwayne's arms are pretty bruised up what with needing to have an IV in all the time and having to have blood taken for testing at least once, and often multiple times, each day. We met with a surgeon on Friday and got on the schedule to have the port-a-cath installed on Monday afternoon.

The hematologist also talked with us about treatment options for Mantle Cell Lymphoma - it seems that there are three primary potential drugs that can treat it. One she immediately discounted as it is a very tough drug to live through and she would only prescribe it for a younger person in relatively good health. Of the two remaining, she indicated that a drug that was developed originally in East Germany from the same components as mustard gas (!) would be the regimen she would recommend. She indicated that if the diagnosis was determined to be certain and received on Monday, Dwayne could start the first dose of this drug late on Monday.

We asked what would happen if we did nothing. The hematologist indicated that the level of lactic acid in Dwayne's body would kill him. She has done a number of tests on other organs (chest - heart and lungs, abdomen) to ensure that there is no damage (yet) - and at this point, his tests have shown good results.

We have been identifying to friends and family that we didn't have a diagnosis, when we *had* been given information about what the diagnosis might be. I hope no one is upset about this, but we have been praying about it and felt that we wanted to know for certain what we were dealing with before sharing anything specific.

I want to share some other information, about what you can do for us (PRAYER is the most important!), what we've been learning through this time (cherishing our relationship with God and each other are numbers one and two), and future travel and treatment plans (at this point, Dwayne will be getting treatment through the Virginia Cancer Center at least through round 1 (this week) and round 2 (4 weeks away)) -- but I think this post is long enough and I'll try to share that information later.

I have also set up a CaringBridge site - my plan is to share information about Dwayne's medical situation there, and "other" entries on this blog. I have set it up that you need to be a registered CaringBridge user to access it, so you'll need to set up an id/password on that site. Here is the link to his page: https://www.caringbridge.org/visit/dwaynecartwright

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