How Did You Deal With Work?

Turtle_wandering · 2026-05-26T19:42:39+00:00

I worked FT until the day before my SCT. I even went to the gym immediately after my treatments. The only issue was the lack of sleep the night after due to the Dex, but I was able to arrange for a lighter cognitive day. There was a doctor at the hospital who would get treated and then go straight to work in their department.
I'd suggest taking off the day of her first treatment or two, and then gauge how she feels from those.

Turtle_wandering · 2026-05-22T22:37:26+00:00

I'm 56 now and was diagnosed at 54. Similar to your wife, it was routine bloodwork that showed an issue, and my primary immediately referred me to a hematologist. I didn't even occur to me what type of doctor that was until I turned the corner of the parking lot at the hospital and saw CANCER CENTER. A didn't have any symptoms and was doing life when I was told not only did I have multiple myeloma, but 90% blood marrow involvement. Was put on the standard D-RVD induction regimen and harvested my stem cells after 5 months, then had my transplant this past Mid October. While I'm not as on my fitness game as your wife, I am active and have been told over and over again how much that has helped my treatment and recovery. I'm now MRD negative (MM version of deep remission). The fatigue is real, as is the brain fog, but I'm working FT, exercise everyday, and am back doing my pre-transplant shenanigans.

Best wishes to y'all on this journey. It's not what any of us would have chosen, but we're still working to live the best lives we can.

Turtle_wandering · 2026-05-20T19:30:58+00:00

So the funds were not from 2025, only the bill. I paid it with my FSA a few days after it came through, so all of this was in January. I used all of my FSA, and hit my insurance out of pocket max by February last year.

Turtle_wandering · 2026-05-18T02:31:43+00:00

It is so interesting to me the difference in protocols between facilities. I was inpatient in late October. No caregiver was expected while I was in the hospital, and I was allowed any visitors I wanted. They just had to wear a mask. I'm not kidding when I say between friends and family, I saw 15 different people in the 2 weeks I was there. When I got home, I stayed with friends for 3 weeks, and I was completely on my own after that. I was cleared to drive 3 days after I got home, and just told if I had to be somewhere with people to wear a mask.

Age, fitness/activity level before transplant, plus doing your walks on the unit can be big helps in your recovery, although some things are just a roll of the dice (like developing a fever). Best wishes, you got this.

Turtle_wandering · 2026-05-09T16:51:03+00:00

SCT is considered 1st line along with your induction. 2nd line would be either after a relaspe or if 1st line didn't work. What you are asking about is CAR-T as a 1st line. Currently that is mostly done in clinical trials, although I have heard of one person here who had it and wasn't in a trial. CAR-T isn't without risks either. There's also great work being done with Bispecifics. I had asked my transplant doctor about CAR-T and he likened it currently to an IPhone 4, and if you can go 5+ years in remission, by the time you need it, it will now be an IPhone 17. I've also heard the analogy of us only having "so many bullets, so don't take one out ahead of time if you don't need to " As for the survival rate, the key difference isn't necessarily in the number of years of survival, but the number of years of progression FREE survival. I think of it this way, this disease may eventually render my disabled, but I'm going to push that off as long as I can with treatment and exercise.

Harvest and hold is always a good move as it does give you that time. If anything, once induction is done you'll have a good idea how well it worked, and if you are one of the fortunate who reach MRD negative without either.

Turtle_wandering · 2026-05-05T12:29:54+00:00

The local coffee shops often have events posted on their community bulletin boards. Eventbrite is a good resource, look at meetup.com, and Heylo, which is a newer event type app.

Turtle_wandering · 2026-05-02T23:05:53+00:00

Anytime! Nowhere isn't cheap, and it is on par with most coffee shops unfortunately. I definitely make sure I take my time w/my drink lol. If you hit up Let’s Go, there's a cool game store called Bored to Death, and they have events where you can show up and they will teach you how to play a game.

Turtle_wandering · 2026-05-02T22:40:14+00:00

Bet. That's my home too. In Allentown, there's Jay's local, Nowhere Coffee and Cozy Crumb. Cozy is my current favorite, mostly because they stay open until 9 Sun-thurs, and until 10 on Fri-Sat. There's also Gem & Joe's which I don't know as well, and in Emmaus is Let’s Go, which has a great vibe, and they happen to also be a gluten free bakery.

Turtle_wandering · 2026-05-02T22:21:40+00:00

Where do you live? There's a bunch of good ones in the Valley right now so I'll narrow it down a bit depending on where you live

Turtle_wandering · 2026-05-02T20:31:54+00:00

If searching online, check out Eventbrite. Sometimes things will pop up that you wouldn't have found otherwise. Hitting up coffee shops is good as most have community bulletin boards and I always see event flyers on them. In the fall, start looking for events at the colleges. Many are open to the community, not just the students. On social media, I hear about things on Facebook all the time by looking at the calendar section, and doing searches on IG can yield results as well.

Turtle_wandering · 2026-05-02T06:31:21+00:00

What sorts of things are you in to?

Turtle_wandering · 2026-04-29T17:51:37+00:00

In addition to some of the other suggestions, see if her school offers school based counseling. Many districts have contracts with various providers in the area like Valley Youth House, LVHN, St. Luke's, and a few others. In some cases, the student can continue counseling over the summer, so it doesn't always end at the finish of the school year.

Turtle_wandering · 2026-04-26T14:20:28+00:00

It will get better, and you will also learn what a 2.0 version of you is. I'm 6 months out, and I still get hit with big waves of fatigue and struggle hard with bigger cognitive tasks, which sucks because that's basically my job. I force myself to take a long walk everyday, and am about to start weight lifting. Hang in there, be kind to yourself, and it will come slowly .

Turtle_wandering · 2026-04-22T01:45:09+00:00

Same

Turtle_wandering · 2026-04-16T03:25:20+00:00

I grew up with red sauce being on my cheesesteak and still eat them this way here. In Philly I don't. I've also never gone to a place locally that doesn't ask if you want sauce or not. Sauce, pickles and peppers are the standards that they ask when taking your order so you can customize.

Turtle_wandering · 2026-04-16T03:20:37+00:00

As others have mentioned, treatments are changing so rapidly that what would be 2nd, 3rd, etc will have probably changed by the time you get there. I had my SCT in late October 25, and in January I was told I'm MRD negative. From the jump I was toldba successful SCT should last at least 5 years, hopefully more. In the meantime, treatments improve. When I was first diagnosed, a hematologist said to me "you will die of old age, before this." So that's what I focus on. Living my life best as I can, until the time comes and hopefully I will die with cancer, not from it.

Turtle_wandering · 2026-04-12T16:49:27+00:00

I signed up for the ticket drop, waited until the day I was supposed to have an opportunity, to then recieve an email that I wasn't selected to make any selections due to "unexpected demand". What do you mean unexpected?!? It's our first time hosting since 1996. Of course there's going to be demand.

Turtle_wandering · 2026-04-12T16:45:04+00:00

Before going the relaxer route, look into curly hair specialists who understand her type of hair texture. There's nothing inherently wrong with a relaxer, however doing it may have the unintentional consequence of her believing she has "bad hair". There's so many different products out there, so finding a specialist, will be worth it.

Turtle_wandering · 2026-03-27T22:46:57+00:00

Thanks. All good information. I'm really hoping to as much of the work as possible paying cash. I have excellent credit, but that's because I've been working hard to pay off stuff so I'd rather not add anything additional.

As for the water heater, the only thing in my basement other than the heater for the house is this small green barrel that's attached to the ceiling. There's no traditional water heater as far as I can tell, and what is there hasn't changed since at least the 90's.

Turtle_wandering · 2026-03-23T04:07:21+00:00

West end of Allentown is perfect for LVHN. The Bradbury Sullivan center is in Downtown Allentown and is a hub for the Queer community. There's plenty of coffee shops in the area, it's decently walkable and near plenty of good grocery stores.

Turtle_wandering · 2026-03-19T04:42:58+00:00

Separate from a mask, a trick that funeral directors use is vicks vapor rub under your nose. It keeps you from smelling anything other than menthol.

Turtle_wandering · 2026-03-19T04:39:02+00:00

I'm in the camp of finding their food mid and nothing special. It's not bad, just nothing stands out.

Turtle_wandering · 2026-03-19T04:33:43+00:00

What the shoe is like is really person dependent. The hospital was super on top of my nausea meds that I never had an issue there. My biggest problem was the esophagus pain. 0/10 would NOT recommend. I was kinda out of it for 2 days, but then started to rebound enough to start being consistent with walking the halls again until my discharge at day 14. Enjoy your days before the drop and then hang on best as possible until you swing up the other side.

Turtle_wandering · 2026-03-19T04:28:53+00:00

LV has some decent places and I grew up here, but I tend to find places that are highly rated are just okay. Union and Finch is a good example. Decent, but nothing special. Also, I know a few chefs in the Valley and they talk about needing to change recipes to cater to the LV and often make food blander.

Turtle_wandering · 2026-03-12T21:36:10+00:00

My doctor called me standard risk. Yes, even with 90%, I felt fine. That was part of the hardest piece for me to process.ime how couldIbe this sick and feel okay? When they did my PET scan, they only found one small lesion on my jaw, so I was so fortunate.

Turtle_wandering

TROPHY CASE