With my fifth chemo treatment scheduled for March 14th, I figured I’d update this journal that evening and also report on the results of the CT scans I had done on the 7th. First, the CT results; they scanned chest, abdomen, and pelvis. There is no sign of lymphoma anywhere. My status changed from “mostly gone” to “no evidence”. More on that later, and I should say that I haven’t yet had a scan of my left femur (where this was discovered originally) or my skull (which had a tumor, as well). So those two spots will need a look.
As for the chemo, it didn’t happen. Here’s what happened instead:
After spending nine days in the hospital last month due to shortness of breath, I noted in this journal that “We’re not ruling out the possibility that I may experience another episode to accompany the last two rounds of chemo, but we’ll deal with that when it comes, and likely with less fear.”
I was on 60 mg of Prednisone when I went home, which fixed my breathing problem by reducing the inflammation, and my oncologist reduced that to 40 mg on March 1st. By the 9th I started getting short of breath and it got much worse, very fast. Even so, I wasn’t scared like I was the first time it happened, since I understood what was going on and assumed another happy ending (along with some decent chicken Caesar salad if I had to go to the hospital).
I’ll spare you some drama and details in favor of the shorter version. I was admitted on Tuesday, the 14th and have had tests nearly every day. I did have another infection in my port – unrelated to any shortness of breath – so it was decided the port should be removed. That procedure went smoothly, and I’m glad to be rid of it. I thought that since my CT scan showed no lymphoma, and my port had to go, I could talk my oncologist out of the last two treatments. The original conversation was that I needed four to six, and I’ve had four. Well, he could not be persuaded.
It turns out there aren’t any tests for Non-Hodgkin-lymphoma at the cell level. Some cancers can be detected through blood work and tumor markers, but the technology on that for NHL is still 5-10 years away. That said, if we have to wait very long to resume, they’ll drop the last two treatments anyway, as it’s a cumulative effect – not so effective when interrupted. If scheduled soon, I’ll get a picc line inserted before my next treatment. Not as invasive as a port, it’s a catheter inserted in a deep vein in the upper arm, under local anesthesia.
Almost done with medical detail (and you wouldn’t believe how much I’m sparing you)….. I won’t have another chemo treatment until my lungs are clear, so back to that. Today was the first day I’ve experienced an improvement! It feels wonderful to see some progress. They still haven’t ruled out the possibility of some type of lung infection, and are awaiting the results of several blood cultures and more pathology reports from a bronchoscopy (a great test to be fully sedated for).
I did learn that one of my chemo drugs, all by itself, is capable of damaging my lungs, in addition to the radiation damage. I’m also told there are plenty of reasons to believe my body will heal itself of this damage once we quit injecting chemo into it. (Poor thing – She has held my heart and carried my soul for all of my days, and I am grateful for her strength and wisdom.)
Last piece – a surprise. An ultrasound of my legs turned up the fact I have a blood clot in a deep vein. That bit of news caused me to lose my equilibrium for part of a day, but I recovered. (There are a couple of questions that I will never ask. The first is, “Why me?” The answer, of course, is “Why not? Who better?” The second question is something along the lines of, “Now what? What else could go wrong this week?” And the answer, of course, is “Do you really want to know?”)
They say it’s likely the clot has only been there for a couple of weeks, it was probably caused by my chemo drugs, and my body will take care of it. I’m on a fairly high dose of blood-thinner for the time being, and it’s not yet determined what ‘the time being’ means. BUT, having a clot in the leg is serious business, and I couldn’t be more fortunate than to be in the hospital already.
Some more good news –
* I’m on the same floor I was on last month, all the nurses and aides remember me, and they’re the greatest bunch of kind, compassionate people I’ve had the pleasure to encounter all in one place. We’re having great conversations and lots of laughter. Their wisdom and humor blows me away.
* I still can’t believe that hospital chefs can prepare tasty, nutritious, appealing meals for so many people every day, but these folks do.
* I have doctors in four different specialties and I trust every one. Well, it just doesn’t get much better than all that, I’d say.
* My dear SiStar, Kitty Armstrong, doesn’t always catch these journal entries, but I have to express my deep and everlasting gratitude for her love and care. This is the sixth time she’s taken me to an emergency room in almost the same number of months. It’s getting to be a routine. And she won’t leave until I insist.
OK, I’d love to say I’m done reporting surprise developments, but I’ll just work with what comes up, and keep you posted. And I’d like to venture a guess as to when I’m going home, but I’ll go when they say so. Thank you, Dear Readers, for all your kind thoughts and the healing energy you send my way. You can see that it works!
Published on CaringBridge.org — March 18, 2017