The Official Real Life Happens PP Member Support Thread

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patswin said:
Got update on buddy's daughter in law. The baby continues to do well. He and his wife and the other grandparents doing grandparent things and caring for her so their son can be with his wife.

There is neurological improvement. She responds to pain stimuli, i.e. arm pinches and such. Heart function was 30%, now 70%. Discussion about getting off ventilator and doing a tracheotomy. Still not conscious however. Any improvement is good though.

Thanks for the prayers, keep em coming.
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All improvement is good. Keep moving forward. Babies are so strong. Prayer works. Praying.
 
Aloyouis said:
What's crazy is that should this next round of chemotherapy work (approximately 90% chance) and if it does and I'm allowed to move to bone marrow/stem cell replacement/transplant they are going to try to force me to take all of the most current vaccines a newborn would take today in Michigan. I started this discussion with my oncologist yesterday and I could tell that it would be counterproductive to argue. Counterproductive enough that I wonder if it would influence their decision to treat me if they knew I will be carefully studying the vaccines that I'll actually take rather than those on the current schedule of over 75 of them. This includes the Covid vaccine and all of its "boosters". What a fucking mess. On the positive side, I'll be able to make my decisions selectively as an adult with a mostly fully functioning brain rather than as a newborn. #ThingsAreAlwaysMoreComplicatedThanTheySeem
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My friend was just told that he is in remission and is facing the same thing. In 80 days he goes in to start his vaccinations. He doesn't seem to be sweating it a whole lot. He's just happy to be here.
 
Alk said:
My friend was just told that he is in remission and is facing the same thing. In 80 days he goes in to start his vaccinations. He doesn't seem to be sweating it a whole lot. He's just happy to be here.
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He is in remission for the second time so he can start the transplant? That is awesome. Each step has a % of mortality attached to it. He just got past another step. Awesome.
 
Aloyouis said:
Sorry for the stream of consciousness post. I need to settle down.
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19,202 of your posts have been A+. This one is a D-.

If you were Breaking Bad, this post would be the Fly episode.

If you were a Christmas song, this post would be "Funky Funky Xmas" by New Kids on the Block.

If you were the Patriots, this post would be Assante Samuel eating pasta with butter and cheese before SB XLII (with his bare hands).

No apologies necessary for writing about what you're going through. The least we can do is read them and I for one appreciate you sharing them at all; I only wish I could do more. Best of luck next week. Sincerely hoping things take the shortest path toward good health so you can be living your best life again ASAP.
 
Aloyouis said:
He is in remission for the second time so he can start the transplant? That is awesome. Each step has a % of mortality attached to it. He just got past another step. Awesome.
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He has already completed the transplant and they have released him. The next step is to get his immune system built up I can't remember if I shared this but after his first round of treatment, they found a second tumor that didn't respond to the first treatment so they had to start over with a more aggressive treatment but it seems to have worked.
 
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Granddaughter no 1 was over today with her bestie putting up Christmas decorations…. Something Ive never done before Thanksgiving….. but this year we are lol. They, her mom and her, were asked if they wanted to foster a husky they said yes. She’s still not sure if she’s ready to keep a dog yet but she loves having a dog …. She beyond her years.

~Dee~
 
3 Point Stan said:
19,202 of your posts have been A+. This one is a D-.

If you were Breaking Bad, this post would be the Fly episode.

If you were a Christmas song, this post would be "Funky Funky Xmas" by New Kids on the Block.

If you were the Patriots, this post would be Assante Samuel eating pasta with butter and cheese before SB XLII (with his bare hands).

No apologies necessary for writing about what you're going through. The least we can do is read them and I for one appreciate you sharing them at all; I only wish I could do more. Best of luck next week. Sincerely hoping things take the shortest path toward good health so you can be living your best life again ASAP.
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Thanks. I am not "slipping" although I do admit to being a little less afraid of dying these days. That has ZERO to do with remaining positive and more to do with knowing I have done the things necessary in case things don't work out.

I have never seen an episode of Breaking Bad though I know the premise.

I have never heard of that NKITB song, thankfully.

Assante did that?

It IS cathartic for me to vent here and I appreciate it.

I read a few papers today on the protocol I am on to get me to transplant. I am a good candidate and it has a high success rate. If you are bored, this is it exactly:

pubmed.ncbi.nlm.nih.gov

Phase II Trial of Pembrolizumab Plus Gemcitabine, Vinorelbine, and Liposomal Doxorubicin as Second-Line Therapy for Relapsed or Refractory Classical Hodgkin Lymphoma - PubMed

Second-line therapy with pembro-GVD is a highly effective and well-tolerated regimen that can efficiently bridge patients with rel/ref cHL to HDT/AHCT.
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

A really great friend of mine stopped by today with gluten free pumpkin pancake mix from Trader Joe's and a hug. :love:
 
Alk said:
He has already completed the transplant and they have released him. The next step is to get his immune system built up I can't remember if I shared this but after his first round of treatment, they found a second tumor that didn't respond to the first treatment so they had to start over with a more aggressive treatment but it seems to have worked.
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Out-Fucking-Standing!!!!
 
Aloyouis said:
Out-Fucking-Standing!!!!
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You’ve got this if my number one granddaughter can do it so can you…she still suffers from residuals but she’s a survivor and I know you are too.

~Dee~
 
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deec77 said:
You’ve got this if my number granddaughter can do it so can you…she still suffers from residuals but she’s a survivor and I know you are too.

~Dee~
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She is a hero!

Residuals... I haven't mentioned them here much. They suck. That said, if you have them,,. you have made it that far. So in a way, a huge way, they are awesome!
 
deec77 said:
Now I know this isn’t as serious as most posts here but for those of you who know me and my connection to Granddaughter no 1 this was the hardest thing I’ve had to do in a while…. She’s always wanted a husky so during Covid a bunch of people got dogs… there was a couple that adopted 2 brothers malamute husky mix and decided they could no longer handle them. Her mom jumped at the chance and they adopted one …. My granddaughter was going through some rough times and this dog was her lifeline… late this afternoon her mom took him for a walk as she always does. She was crossing in the crosswalk (Here in CT you must stop at all crosswalks..) and a truck slowed down but didn’t stop he proceeded to hit the dog and then ran over him there by the grace of God her mom wasn't badly hurt. I got a phone call from her mom, my granddaughter was trying to figure out where they were and tracked her via her phone. Needless to say she was at the Animal emergency hospital…. Ugh she was devastated it took me, her dad, and her grandfather to calm her down … Her mom was a little banged up but ok …He was a special dog and he will be missed.

~Dee~
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I'm so sorry Dee.
Aloyouis said:
So, my chemotherapy start date is November 25th. The PET scan will be done after 42 days, and they may add another 42 days worth depending on the results.There’s a chance I might need some radiation this time. After that, I’ll have a bone marrow transplant.

I’ll keep working as long as I can. I can work from home and see clients through Teams.
That might change during the hospital stay for the transplant. We’ll see how I feel. I know it sounds strange, but I’ll need a distraction. Also, the longer I delay taking disability time, the better for the family for complicated reasons.

The funny part is that if this last scan had been clean, I would have retired almost immediately. Now, given what’s coming, it makes no sense not to have two health insurance plans (mine through work and Lynn’s through her pension), the ability to go on disability if treatment becomes unmanageable, and inexpensive work-based life insurance. When I leave, I can take that life insurance with me, but it’ll be expensive.

New chemo protocol below. I’ve begun to hate whiteboards, LOL.

Good news? There’s still a good chance that this new protocol of chemo will work well enough (about 90% chance) to get me to the bone marrow transplant. That will be a 50-50 proposition

If I get through that we’re gonna go on a long European vacation. Live life!
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I wish you all the strength in your next chemo journey. I hope it works as planned so you can move on to the next steps after! My daughter had a mix with the red devil (doxirubicin) that shit is no joke!
I look forward to hearing all about your European vacation that I know you will take one day! Sending you love 💜
 
patswin said:
Could use a prayer for one of my best friends sons and his wife.

They were married about 18 months ago, and expecting their first child. She went into labor and was in the delivery room when she went into cardiac arrest with no warning. An emergency C section was performed while simultaneously doing CPR. She and the baby were flown to Boston downtown. The baby girl has a small skull fracture from the emergency delivery but is fine and came home today. His wife is in a Boston hospital in a coma on a ventilator and a feeding tube. There is some hope with positive neurological signs. My buddy's son is 30 and a cop here in town, he's close to my son and their entire family are the best of the best people.
We're just so shocked. All of our circle of friends are rallying around them.
It's a horrible tragedy for a couple of kids just starting their life.

If you could spare a thought and a prayer for them, thanks.
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Prayers said. This was the biggest fear of mine going into labor. I believe in miraces and hope to god she gets through this. This is so heartbreaking.
 
TBrownslady said:
I'm so sorry Dee.

I wish you all the strength in your next chemo journey. I hope it works as planned so you can move on to the next steps after! My daughter had a mix with the red devil (doxirubicin) that shit is no joke!
I look forward to hearing all about your European vacation that I know you will take one day! Sending you love 💜
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Thanks. Doxirubicin is the only chemo that’s being repeated. The other three drugs are all different. I hope everything went well for your daughter!
 
Aloyouis said:
Thanks. Doxirubicin is the only chemo that’s being repeated. The other three drugs are all different. I hope everything went well for your daughter!
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Ahhh ok. Unfortunately I don't think her tumor is ever going away. Everything they tried to do to get rid of it just aggravated it more. It's benign but really aggressive and can wrap itself around things and squeeze. She's had 4 different kinds of chemo, Doxirubicin made that thing bust out of her nose, size of an adult thumb. Now we got it down to the smallest it's been since we found it and it's not doing anything Not growing not shrinking and to me that's a win. They want to try more chemo, but I can't bring myself to say yes because I'm terrified of that growing back and blocking the artery that is behind it. Surgery is a no go because it aggravates it, if you don't get 0 margins then it will grow back.

It has tentacles that grow so it's really hard to get all of it. I call it Vecna and I've come to terms with that it will likely be in our lives forever. Also, any surgery she has in life could possibly result in another. It's tiring and she's old enough now to know what's going on
 
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