The Fear never really goes away. I was diagnosed with Follicular Lymphoma almost 12 years ago. I haven't needed treatment in almost 10 years. But The Fear is still there.
This may take a little while to explain. Bear with me.
Last fall, our gas heating company tore up our street to put in new gas lines. Then they tore up our front lawn to put in new lines from the street to our house. Then they left a note saying they needed to tear up a wall in the house to connect our gas service. I didn't call the number because I didn't want my wall torn up.
That was a few months ago, and last week they finally came to the house to say the work needed to be done. Yesterday, two very nice young men looked at the job and said they could do the work without needing to tear up the wall. They finished in a couple of hours, and then their boss came by to check the work and make sure the heating system worked fine.
Last night, I woke up at about 3:00am, covered in sweat.
My guess is that any Follicular Lymphoma patient reading that line just felt their blood go cold.
And of course, mine did, too.
I got out of bed, toweled myself off, and turned up the air conditioning a little bit. Then I did a quick review in my head of the "B symptoms" -- chills, fever, unexplained weight loss, lymph nodes popping up, to go along with what were potentially night sweats, and that could possibly be a sign of transformation. I've had none of them. I manged to get back to sleep, and I remained seat-free for the rest of the night.
This morning, as I sat at the kitchen table, and my foot rested against the baseboard heater. And it was very warm.
Apparently, when the gas guy came to "check the system," he turned on the heat, nice and high, and didn't bother to tell me, or to turn it back down. Our air conditioning is on a different system, so that kept us from realizing it.
So that explains the night sweats, and it should explain why they went away when I turned up the air conditioning.
At least I think that explains it.
Now, everything seems a little more horrible at 3:00am, so it's easy to panic at that time.
But it's also a reminder that The Fear never goes away. It sucks.
And to help calm your own fears, I was hoping to link to a site that did a good job of explaining B symptoms. I can't find one. Every one I saw was a kind of clinical, straightforward description. "Night sweats" doesn't really do it. "Drenching night sweats that make you have to change your sheets" is more accurate. Don't confuse a warm room or hot flashes with a drenching night sweat. Don't let my experience put The Fear into your head and make you see B symptoms where they don't exist.
The Fear is always there. But that doesn't mean we need to let it control us.
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9 comments:
Yeah the fear is there, but we have to live our lives as normally as we can. Hey I was wondering if you can write or give a good website that discusses LDH as a prognosticator for NHL
Hey Warrior Woman.
I always go to Lymphomation.org when I need to find out about something I don't know about yet. So you can try there first:
https://www.lymphomation.org/tests-labs.htm#LDH
LDH is a tricky thing as a prognosticator, from what I've read. A rise can be caused by other things, even heavy exercise (since it can be a measure of cell damage, not just lymphocyte activity). Probably a sign for the doc to look at some other things to get a better sense of the cause.
Good luck with things. Stay a warrior.
Bob
I made the mistake of having my blood draw (for my quarterly Onc visit) right after my workout at the gym. My LDH was through the roof....scared the heck out of me, but my Onc wasn't too concerned when I told her I the the draw after a visit to the gym. On my next draw, my LDH was within normal limits.
You are right, the fear truly lingers right around the corner, even over 13 years after my diagnosis.
Just don't let it consume you!
Thanks Bob for all you do!
The fear of relapse is ALWAYS there. My wife (72, fNHL) was 36+ months in remission following a CAR-T infusion, and she was hoping she had been cured. Then this month a CT/PET and lymph node biopsy showed fNHL progression.
She is the only known fNHL CAR-T patient who relapsed after being in remission 6 months following CAR-T infusion. Since she had such a long CAR-T remission she will do a 2nd CAR-T infusion in September.
William
William, I'm sorry to hear that your wife has relapsed. I have appreciated that you share her battles and experiences with treatment through Bob's Blog. I pray she will have a new remission that will last for many, many years. Keep us updated, we care. <3
Shelly
Thanks Bob. I've been following your blog occasionally for a while now. On the night sweats, yes, they can be frightening, but interestingly, not always associated with lymphoma. I had night sweats prior to treatment. Oddly though, even though I've been in remission now for nearly eight years, if I get sick with a cold or anything like that I sometimes sweat, and sometimes sweat quite badly. It's been that way ever since I had treatment and as I say, I've been been in remission. I guess something changed in my immune system as a result of the treatment.
The night sweats are fine as long as you otherwise feel ok.
I too get them when I have a cold or a virus.
Thanks, everyone. Ni night sweats since then, so I think it was my heating issue. I appreciate all of your support.
Stay well.
Bob
Amen to the fear. That's a monkey that never goes away. And the salt in the wound of it is... the longer I'm okay, they closer I feel I'm due to be not okay. But, that's the cross to bear, right? 2+ yrs post CR, and I am still paralyzed thinking about if and/or when I need to get treatment again, and how it may go. Nothing takes my breath away faster.
I too have had the occasional night sweat since CR, but it was always an isolated incident, usually accompanying a cold or some virus or too many blankets, or what have you. But, yeah, the fear. The fear is always a passenger.
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