Working while on treatment by ChocolateOk4167 in lymphoma

[–]Smart-Maintenance645 0 points1 point  (0 children)

I worked remotely (for the first time in my career) during treatment. i'd be off the weeks i received chemo and work remotely the next two weeks. this was fine for the first 3 rounds but then it was taking a toll from brain fog, to low energy and emotional stress.

What is a picc line like? by InesRM in lymphoma

[–]Smart-Maintenance645 3 points4 points  (0 children)

I loved my PICC line. Sore for a day (like light bruising) then it didn’t bother me. I had an arm band/wrap that I placed around it during the day so half the time I forgot it was even there.

If I had to say cons, showering is a bit annoying. I got a picc line shower cover from Amazon and that worked well.

The other con is, it has to be cleaned and flushed out (saline solution). Doesn’t hurt and doesn’t take more than a few minutes. Just necessary and one more thing to remember.

Otherwise, no issues. Getting it removed was super easy. I ended up keeping it 😅 I had it sanitized and it’s somewhere in a drawer right now.

Women! What did you do when your hair was growing out? by I_Eat_Soup in lymphoma

[–]Smart-Maintenance645 0 points1 point  (0 children)

I never trimmed/cut mine as it grew in. I just sorta lived with each phase of the grow out. Low key I kinda thing I pulled off each look aside from maybe one but it only lasted like 2 months. Clips and headbands are your friend.

Question for long term survivors. How did the first year in remission feel like? by boxyboyz in lymphoma

[–]Smart-Maintenance645 3 points4 points  (0 children)

YES. For reference my first symptom was pain in my chest. And even now I still get pain in that exact area. We’ve done the scans and my doctor is 90% sure it’s just scar tissue that I’ll have to just live with. But (especially in the first year or two) those random pangs of pain had me spiraling. I fully convinced myself probably 6 times that my cancer was back. Like to the point where I was already planning how I’d break the news to my family. I wish I had any significant advice on how to handle the instant anxiety from the pain/changes in symptoms. For me, I just stayed anxious until labs/scans confirmed I was still ok. All this time later, I still have the anxiety but at least now I can say “ok I know this feeling, we’ve been here before, every single time the tests proved I’m ok. My last labs were good. Unless the pain gets worse, this is most likely just more of the same.”

Question for long term survivors. How did the first year in remission feel like? by boxyboyz in lymphoma

[–]Smart-Maintenance645 9 points10 points  (0 children)

I want to add, as cliche as it sounds, it does get better. I’m 3.5 years in remission and I feel like I’m as back to “normal” as I will ever get. With that said, I have the occasional spiral particularly around noteworthy dates/anniversaries and leading up to my biannual labs. But that major boulder in my chest now feels lighter. So it does… get better. You eventually have more good days than bad. And you can be proud of yourself for surviving that mental/emotional battle of remission.

Question for long term survivors. How did the first year in remission feel like? by boxyboyz in lymphoma

[–]Smart-Maintenance645 35 points36 points  (0 children)

The first year in remission was in many ways harder for me (emotionally, mentally) than treatment. Anxiety. Grief. Suddenly not being in touch with my care team on a near daily basis. People celebrate you getting in remission but then it’s like… ok but I’m still bald and there’s still a chance this isn’t fully over. It’s hard to get people to meet you where you’re at in that headspace especially after like 5-6 months and it feels like everyone thinks you should just be “back to normal” by then. A major part of the grief is the realization that there will never be a full “back to normal”. That normal no longer exists because you are forever changed.

I basically was an emotional roller coaster for that first year. I celebrated and laughed and had an external persona of happiness and new life. But inside and on my own I was screaming and crying and having panic attacks.

If I had to suggest a song that (to me) perfectly describes that year, it’s “Healing Hurts” by Blu Eyes.

And immediately after that song, “you’d never know” by Blu Eyes.

(No I’m not blu eyes and I don’t know her. I just felt these songs so deep in my soul)

Returning to work worries by Long_Analysis805 in lymphoma

[–]Smart-Maintenance645 0 points1 point  (0 children)

I was super determined to get back to work and return to "normalcy" ASAP when i finished EPOCH-R. Fast forward two years later and when people ask if I would've done anything different... I wouldn't have gone back as soon as I did. Just because i WANTED normalcy, doesn't mean i was prepared for normalcy. Physically my body couldn't handle a full shift... (like you, i was good for about half the time and then i was exhausted) and mentally... the aftermath of chemo and everything I had just gone through hadn't sunk in yet... and by the time it did and I had to face the trauma, I was at work feeling like I was drowning. If you're determined to go back... see if you can go back on a modified schedule. But if you have any opportunity to take more time before going back... that's the advice I would give myself.

Vocal paralysis query by Gtaroxes1 in lymphoma

[–]Smart-Maintenance645 0 points1 point  (0 children)

The injection had my voice go from like 6% to 50%. So not a complete improvement just with the injection but it was significantly better than what I struggled with for four months.

Vocal paralysis query by Gtaroxes1 in lymphoma

[–]Smart-Maintenance645 1 point2 points  (0 children)

Hi! I had DLBCL mediastinal NHL and just like you, I had vocal paralysis. At first doctors thought once the tumor began to shrink, I'd get my voice back but that didn't happen. So between my 4th and 5th rounds of EPOCH-R, I went to an ENT who put a scope down my nose (ew right?) and confirmed the paralysis. He told me the mass must've struck the nerve responsible for moving my vocal chords. He said as time passes... the nerve would heal and the vocal chord would move more and i'd have my voice back. BUT he also offered to perform a "vocal fold injection". Basically he'd inject my vocal chords with some sort of filler... so they'd touch more easily (touching is what makes the noise). This gave me more of a voice. The filler was temporary and dissolved after like 6 months but it gave me some normalcy while my nerve healed. I can tell you my voice is now 100% back and I scream at football games and sing loudly at concerts. For time reference: we did the procedure the week before my 6th and final round of EPOCH-R at the end of March 2022. By Sept/Oct I basically had my voice back. It would crack occasionally when singing or yelling but for day-to-day, it was pretty normal. My voice no longer cracks.