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Back with the living--thanks primarily to my two awesome kiddos


LexieCat

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I did a lot of hesitating before urging them to fly out here but I'm sure glad I did, I think we all needed it. Medical care has not been seamless, and I felt almost completely out of it for the first week or so. No way could I have kept track of everything as needed.

Now, though. feeling MUCH better. Not near "normal," but like a system is growing/locking in place.

New recliner is awesome for sleeping! It's annoying not to have the bathroom and kitchen readily available, but comfy sleeping is most important.

Supposed to have skilled nursing visit this week, and as I think Steph mentioned, have an infusion scheduled for next week. Will post or have Steph post here as needed.

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Lexie,

I'm with Tom; seeing your post just made Christmas more real to me.  So glad to hear of your improvement and yes, enjoy that recliner and binge watch anything and everything you want.  Steph did a great job of keeping us updated.  Please let her know how much we appreciate what she did.

Lou

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So things seem to be going OK this week. I go for my next infusion tomorrow morning--feeling much less anxious with my daughter here to help with mobility, etc. It's a quick infusion--only about half an hour in the chair, so should be home early.

@Rower MichelleYou will be happy to hear the medical marijuana is the one thing that has helped my appetite--it was like magic! I'm in the process of getting my card but for now had a friend donate some honey, sugar, and plant (which my daughter cooked down to butter, which we've been masking with blackberry preserves). It hasn't helped that much with nausea, which is the only thing kinda still bothering me. For that I'm taking meds.

Virtually no coughing going on. It's hard to judge shortness of breath. I'm on O2 at home and for now I'm happy with that. I'm not walking further than the end of the hallway. Home health came out today and gave me a bath/shampoo, which felt really good. They, as well as PT and OT, will be out a couple of times a week. 

I'm so glad I came home when I did--we are getting our routines adjusted here (mine and Steph's) and so far, it's going well.

I'm also at least functional enough to do a bit of techy stuff (set up new Apple Watch), which is also encouraging.

Probably not gonna have a chance to catch up with everyone's situation but hope you are all doing well! I'll check in as I can--it's just so great to be feeling stronger.

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Lexie,

Love this report.  You really do seem to be getting into the swing of things again and that is great.  Somehow recuperating is always better at home for me, and likely for most folks.  Keep up the good work.  I always look forward to your updates.

Lou

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Very glad to hear your update!  Glad the MM is helping, back in the 70s my grandma used it for chemo related nausea.  I didn’t know about it until recently.  Evidently my Uncle had a somewhat sketchy young adulthood and was able to keep grandma supplied through treatment.  You know the drill, it’s one day at a time so keep going. 

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Great to hear from you, Lexie. I also had home health care after my surgery, and they all helped to get me back on my feet eventually. 

Sending you lots of wishes for healing in the New Year. And best wishes to your kids too. So glad they're able to be with you. 

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On 12/23/2021 at 6:27 AM, LexieCat said:

I did a lot of hesitating before urging them to fly out here but I'm sure glad I did, I think we all needed it. Medical care has not been seamless, and I felt almost completely out of it for the first week or so. No way could I have kept track of everything as needed.

Now, though. feeling MUCH better. Not near "normal," but like a system is growing/locking in place.

New recliner is awesome for sleeping! It's annoying not to have the bathroom and kitchen readily available, but comfy sleeping is most important.

Supposed to have skilled nursing visit this week, and as I think Steph mentioned, have an infusion scheduled for next week. Will post or have Steph post here as needed.

Lexie!

I've been away from the forums for awhile and just popped in to see your post. Wow I had no idea what the last couple of months have been for you. I'm so happy you have family with you, I remember you saying you were moving closer to them, are you saying that goal has been realized or are u still in yr same home?

Glad to hear your breathing has improved and you seem so upbeat with your daughter with u !

I think of u often! Take care. 

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Hey Lexie,

I haven’t been on for a bit.  So sorry to hear about what’s been going on with you.  Glad you’re starting to feel better.  I know you and I were diagnosed around the same time.  I was on a clinical study for the past 5 or 6 months.  Tumor was shrinking and now it isn’t.  Dr gave me some other options, 2 standard of care combos of chemo and 2 other clinical trials.  Not sure what I’ll do.  It hasn’t spread, which is great news, but the fact that it progressed again isn’t ideal.  I’ll make a decision next week.  I need to get my strength and weight up.  I feel like I need a break from all the side effects for a while.  What treatment are you on now?  So glad your daughter is with you!  That in itself helps tremendously.  Take care.  I’ll be thinking of you,

Babs

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