Boy, that’s a mouthful!
I went to Hemosapien for my checkup the day after the election (November 7). Gooday had previously discovered some swollen lymph nodes in my neck on my visit to BATCC back last April. He seemed unconcerned and said that they did not seem to be CLL type swollen nodes. Well, last week, Hemosapien noted them, too, and found some more in my armpits. He didn’t seem too concerned, but ordered a peripheral Blood Flow Cytometry, which is a test done from a blood sample rather than from bone marrow aspirate.
I have not been feeling well. In fact, I have been feeling rather wretched, ill from some unnamed, generalized malaise, and displaying symptoms that were familiar from my bout with CLL. My blood work looked good, but the swollen lymph nodes were either unexplainable, or simply not explained, or something that merely bears watching rather than action. CLL is a lot like that.
My Peripheral Blood Flow Cytometry came back while I was away on 11/9/12. I had previously told Hemosapien just to fax it to my office and I would get it on my return, which would have been last Monday. I wasn’t feeling well last Monday and didn’t go in to the office, but my brother saw the report on the fax machine and decided to call me about it. He read the result Hemosapien had underlined, “No immunophenotypic evidence of Chronic Lymphocytic Leukemia.” This was the good news I had hoped for as it meant that after exectly three years, I was still in remission. Three years in remission is a good thing and a cause for celebration, no matter how bad I felt that day. This news made me feel better.
I went on a business trip Tuesday and Wednesday with a business associate from Caterpillar, which included a trip to Mobile on Wednesday. My friend had never been to Mobile, so after we were through with our business, I took him East on I-10, through downtown Mobile (which has grown and become quite impressive with some tall buildings), through the Bankhead tunnel, across the causeway, where we found a nice place for a late lunch in the town of Daphne, Alabama, on the East side of Mobile Bay. It was a nice trip: Good business with a good friend, followed up by a nice lunch and then two-and-a- half hours to discuss our plans for business on the way back, all on a beautiful day for a drive.
Yesterday morning I got up and went to the office. There on my desk I found the Flow Cytometry report. I saw what I expected to see, then read further, seeing something I did not quite expect. The sentence before the good news that Hemosapien had underlined read, “Peripheral Blood with a very small Kappa predominant B-cell population showing dim CD10 expression (<1%).”
Ah! I’m sure you understand every bit of that! If not, let me help you. There are Kappa type B white blood cells and Lambda type B blood cells. The Kappa and Lambda are both proteins that, together, make up a complete antibody. These usually occur somewhat proportionally, but you can have disease that is Kappa skewed or Lambda skewed, and the ratio of the two is an important tool for your physician to gauge your response to treatment, or the failure of your treatment. Right now, my ratio is slightly skewed towards Kappa, but well within normal limits, having a ratio of 1.33. This is a good thing.
However, a very small, but observable number of my B type kappa white blood cells (and CLL is a cancer of the B type white blood cells) have a noticeable expression of the protein CD10. CD10 is an enzyme that inhabits the surface of the cancer cells, not only of CLL, but of Acute Lymphocytic Leukemia, Burkitt’s Lymphoma, and Follicular Lymphoma. It can also be an indication of Richter’s transformation, which is where CLL changes into Non-Diffuse Large Cell Lymphoma. This happens in about 5% of CLL patients, and can occur suddenly, even in patients who are in remission. All of the above mentioned lymphomas are acute and dramatically more dangerous than the CLL I am now in remission from. The worst one is Richter’s Transformation leading to Non-Diffuse Large Cell Lymphoma. Naturally, this is on my mind, and was on my mind before I read this report, since the growing number and locations of swollen lymph nodes was already known.
The Flow Cytometry report also says, “In summary, a very small kappa predominant B-cell population is detected showing CD10 Expression (<1%). The significance of this small population is not certain however the possibility of a very low-level peripheral blood involvement by a lymphoproliferative disorder cannot be entirely excluded.” Now, while I am glad of the things it did say, this is something I’d rather not read in my report. It has not been there before, nor have the swollen lymph nodes. This is just the kind of thing that can send a layman with more than a little knowledge, dangerous knowledge, into a tailspin of despair.
I put in a call for Hemosapien. Nurse Hallie called me back, but dammit, my phone had gotten accidentally switched to silent mode, so I missed her call. Nurse Hallie could not answer my question, anyway. Hemosapien will have to call me himself. Had he felt this was an issue that needed immediate further investigation or action, I would have heard from him. I still want to talk to him, but I’m sure he will say, “We will keep our eye on this, watch, and wait.” That is the hallmark of CLL . . . watch and wait. For a person used to doing something, watching and waiting is sheer torture.
I am trying not to waste this time of remission worrying about what may happen in the future. The number of things that may happen in the future that are good, or bad, that may be completely unrelated to this cancer of mine are unlimited. I could die in an accident. I could die from a heart attack. Or worse than all of these, I could die from nothing at all over worry about something that may or may not happen.
So here goes: I see this. Hemosapien sees this. Gooday at BATCC will see it when I go back there in April. It will be what it will be. In spite of my best efforts, there will be days when this will worry me to distraction, but I am going to make sure that those days are few and far in between. The fewer and farther, the better.
Some days we walk in victory. Others, we walk in despair despite victory . . . and it is on these days that we do ourselves the most damage. Yep, I’m going to worry. I’d be misrepresenting things if I told you I wasn’t. But I’m not going to worry too damn much. I’m simply going to get busy with the things I need to be busy with . . . and deep, dark, foreboding thoughts should not be part of those things that occupy my time. While this is easier said than done, it will be done. It will be done. Done!!!
As Gooday would most likely tell me, “Let me worry about that. That is my JOB!”
Laymen with knowledge can be dangerous. I am my own worst enemy. I must watch out for myself. Perhaps I will hide when I see me coming.
And by the way, TODAY is the day Dr. Meera Sachdeva and her cohorts will be sentenced for their shenanigans on the treatment of her cancer patients. I will report back. It is likely that she has more to worry about, TODAY, than I do.
Wait, I just think I saw a disorderly lymphoproliferative B Cell go flashing by. No, it was just my imagination, once again, running away with me. It was just my imagination, running away with me. Hey!! That will be today’s theme song. It will now be stuck in my head all day.
There are worse fates. I LIKE that song. Who doesn’t??