We returned from Nashville last night after I received my 3rd treatment yesterday. I have completed the first 28-day cycle and have begun the 2nd.
I have much to be thankful for, so I thought I’d share.
But first, Kim asked me this morning if I had ever explained why my site is “dbw26.wordpress.com”. Well, the “dbw26” isn’t indicative of my being the 26th dbw site, rather, the number 26 has been a magic number of sorts the past couple of years. I can’t possibly enumerate the number of times I seem to mysteriously notice when the number 26 is visible somewhere. Very silly, really. I think I drive Kim crazy every time I announce “26!”, but the kids have enjoyed. And pastor/friend Jared thinks I’m crazy, though he hasn’t denied its seemingly uncommon prevalence. Anyway, 26 became my number. The image of a recent Waffle House bill is just one of a zillion examples. Meaningless, of course. Right?
The numbers that I really wanted to tell you about are those of a pancreatic enzyme called lipase. After my last round of treatment, having returned home from the ill-fated visit to Nashville on 11/01 which included a 4 night stay in the luxurious Sarah Cannon Cancer Center hospital, I was feeling great and wanting to have some incident-free time between treatments. Frustratingly, the day after treatment on 11/07, I received a call from one of the research nurses as Tennessee Oncology telling me that my lipase level was 3 times the normal limit and that I likely had pancreatitis, an uncommon but known side effect of the immunotherapy.
I had no symptoms whatsoever. Surely this had something to do with my not eating and losing weight (by the time I left the hospital I was down about 16 pounds from my normal weight). But the nurse said, “Not likely. Probably the drug.”
So they were concerned and were wondering if I needed a steroid infusion to treat the issue. They had me get blood drawn every other day at a local lab to monitor the lipase value. The good news is that, despite having just had treatment, the value continuously dropped from that high value down to moderately elevated by the end of last week. They had me get bloodwork again on Friday, explaining that they’d use that value to determine how to proceed when I came in on Monday for treatment. I wasn’t aware that I wouldn’t receive the immunotherapy if the value hadn’t returned to near normal.
When I arrived at the clinic yesterday, it turns out that they hadn’t received the results yet. So I had to wait in a chair for a couple of hours until they got the lipase test result and the standard chemistry from the blood they drew that morning. I got a little nervous.
Well, the great news is that my blood lipase had returned to almost normal! So that’s one number for which I’m praising God, because no one at the clinic had a good explanation as to why it was so high and then returned to normal without any steroid treatment or change in the regimen.
So, as of today, we’ve completed 3 rounds of immunotherapy infusion, and I’ve begun my second 3-week course of pills. The hard part about starting new therapies, especially experimental ones, is the wait to determine if the drugs are working. In 4 weeks I’ll get a CT scan to see if the tumors in my body are responding to treatment and are shrinking. But I did get a bit of good news this morning. I received an automated email telling me that I had the lab results ready for me to view (from blood drawn yesterday). I opened the results to see how things looked. I can tell you that not being able to eat vegetables is affecting my nutrition, so I’m going to need to address this with supplements and juicing.
I didn’t expect to see the measurement of the “CEA” cancer marker listed on the page (a measurement of cancer antigen in my blood). I thought maybe the doctor was withholding this information to keep me from stressing. I admit that I felt a pang of anxiety when I saw CEA listed because I’ve not really wanted to know, honestly. I’ve been focusing on enjoying life, each day, trying not to worry about what’s going on inside of me. But my eyes naturally scanned to the right to see what the value was. I kissed my wife about 10 times when I saw that it was in the “normal” range. Now, keep in mind, I can’t get too excited about this, because this is just one measurement of disease, but it certainly is much better than seeing that it had gone UP since I went off chemotherapy a few months ago. So, praise God. Again.
I’ve seen good numbers this week. And if you’ve been reading my posts, you might recall that I’m currently reading the Book of Numbers. What’s interesting is that God had shown the Israelites many signs and performed miracles for them, but they continued to grumble and disbelieve. I was convicted of this fact as I read this morning. I, too, continue to struggle believing in God’s love and good plan for me. But He is gracious and this is a long journey. I wouldn’t have thought the Book of Numbers would be so significant to me. This time around reading it, it is clearly speaking to me now because I need it.
Thank you so much for your prayers. I know in my heart that they are why the pancreatitis presumably resolved on its own such that the blood lipase returned to normal. And I also know, again, in my heart, that your prayers, said in faith, are why I saw the normal CEA value this morning. My mind still wants to cling to science and medicine and seek answers there, but they provide no rest. Knowing that we, as a body, are praying for each other is a soft pillow on which to lay my head.
We’ll continue to watch the pancreatic enzymes and hope and pray that they remain normal. And, of course, that the drugs are doing what the doctors hypothesize they will do. It’s a long battle.
Have a great Thanksgiving, everyone!
Oh, and if anyone is interested, the CEA value was 2.6.
Peace and love,