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And 12:30am we meet again....sigh. Ah well it is what it is. Just lots on my mind for tomorrow. After my regular 8:45 appt. I meet with a new Dr. who's part of my hematology/oncology team. So I'm curious to know if anything had come back with my biopsy report and the 'thumbprint' of origin as they call it to know exactly which organ it started with so they know which treatment to use. Obviously as a smoker we know it's the lung.  So I don't know if we will be talking about after my radiation treatment such as chemo and/or if this is part of my weekly follow up as a whole and what to expect for upcoming treatments following the radiation for the 2nd part of my battle. 

 

My 'note taker' is out of town and it will be just me and my mom today. My mom is good at taking some notes but tends to get lost in the details which is understandable. So I already have my notebook ready with a list of possible questions already written down just in case I slip back into the whole 'deer in the headlights' phase again. That way I can just hand him the notebook and let him fill in the rest. I also have one prepared for my mom (just in case). The good thing is they always very patient and give me time to catch my breath and soak it all in and of course always give me a print out of what was discussed at the end so I can call back with any questions at any time in case something was missed. So until then I will try to remain as calm, cool and collected as I can and remember to breathe. Let the Dr's worry about the 'medical' part I cant control and focus on the parts I can control and work together as a 'team'. I've already packet and separated all my meds as requested that way I can just grab my bag without dealing with that stress tomorrow morning and the whole double checking that I have everything. It's all packaged, bagged, labeled and ready to go!

 

Other than that yesterday was another good day. Went to lunch with my son then we came back to the house and hung out for a bit. Just talking and laughing and keeping things light.  It's funny after my mass nesting/organizing of the house over the past weeks - he was like WOW! Just noticing things for the 1st time almost. It was pretty funny he didn't even realized we had tiled the kitchen floor years ago - he was like how did I miss this and what did it used to be?? LMAO. Amazing what a nice throw rug and good mop job will do! 

 

I also went online and did a major de-tash of all my soap supplies vs them just rotting away. It was bittersweet for me however something that needs to be done.  A lady a few hours away has a sister who is ready to start her soaping journey so I offered up all my supplies and tools at a really good pay it forward deal that she just couldn't pass up. This way I can off load everything at once! Just make it as easy and simple as possible for the both of us - she's not spending a ton of money for what she's getting and I'll have some extra cash in my pocket as well as making lots of space in my spare room. I had 2 huge curing racks that were 6x4ft so you can only imagine the wall space that took up! One will go to her the other is now in the shed serving it's purpose so I have a whole empty closet again! One of my friends has access to boxes at her work and will bring them by so I can start getting things packed up and separated during the week so that should keep me busy and mindful for a while. And once all that is gone I'll be able to set that room up as a guest room/temp office for when I'm ready to start back at work. 

 

Yikes - almost 3am!! Time for me to 'try' and catch some shut eye so I'm not a zombie at the Dr's tomorrow! Hope everyone has a great week!!!! 

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Hoping you get good news today hellkat :) 

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One day at a time and one doctor at a time.  Things will all fall into place and you will know what your plan of action is.  Hellkatbaby, I actually took a little tape recorder (my husband put it in his shirt pocket) and turned it on while talking with the doctors.  Most of the cell phones have a record feature on them.  That way, you can listen to what the doctor says when you get home and be sure you did not miss anything.

When you are done with your house, boy I could use you over here.  My husband and I are trying to purge things we do not need anymore.  I am getting very tires of dusting the nicknacks and the past dogs (we had them cremated and my husband can't bring himself to bury them).🤣

I am praying for the wisdom of all the doctors.  They have much more advanced treatments and cures.  

Stay positive and strong.

Linda

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3 hours ago, jillar said:

Hoping you get good news today hellkat :) 

 

Oh I so did Jillar!! That 'thumbprint' they were waiting on - turns out I'M IN the 1-5% that have a genetic marker or defect as they call it that will actually work in my favor!! They know exactly what drug to use that fits with this TEAM DEADPOOL genetic marker/defect like a lock and key!  So instead of chemo and immunotherapy I will be only taking 1 pill a day that specifically targets and attacks this particular marker only,  while leaving the healthy cells alone! I think we were all just SHOCKED! I know it was something the Dr's were really hoping for and mentioned it as a 'BIG IF' and today the BIG IF WAS CONFIRMED!!! And as far as they are concerned things just took a whole new turn in my case and they are really excited, as am I!!

 

It was ALOT to take in, very surreal almost like a dream. I've been up since 12:30AM and I still have not rested or slept since this new news! I know I still have my 'Battle Royal' coming up -  but I'm doing this DEADPOOL STYLE!! And I plan on kicking ass and taking names for as long as I can!!!

 

So starting after radiation on the 20th I have my appt. with them on the 28th to go over this new course of treatment and what to expect. They will be delivering the meds via ins. to my home vs me having to go to them and then I will just go in for my follow ups. I already have it set up to get with their nutritionist as healthy eating and clean lifestyle are KEY! That body-mind harmony that Boo mentioned.  I let them know I will do everything on my part to keep myself healthy and in shape and worry about what 'I' can control and let them handle the medical side and really work as a TEAM!!! They were really impressed at the changes I've made so quickly and how positive my outlook has been which makes their jobs a lot easier as well. 

 

I'm still just spinning at the moment. This is the 1st time I've sat down since around 4:30 - 5:00am when I tried to sleep but it never did find me. Tonight I hope, hope, hope with all the news I will finally just sleep. 

 

For now I'm off to take a much needed warm bath and just soak and relax for a bit - then crawl into a clean bed and wait for sleep and dreams. Until tomorrow - TEAM DEADPOOL is game on!!

 

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Positive news is always good for the soul and it seems you are getting the uplift that is so needed for you at this time.  I am impressed with your positive and assertive attitude on this -- this will carry you far in this battle.  Good for you and keep strong!!!!!

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Posted (edited)

Oh hellkat what wonderful news! I'm really happy for you :) Now hopefully you can get some much needed rest, xoxo

 

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Edited by jillar
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Yeesssssss!  How absolutely fabulous is that?!!  Clearly this trespassing junk doesn't stand a chance against you and your crack team of doctors.  I'm so very happy for you, Hellkat -- and healthy living for the win!

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Oh Hellkatbaby, I am so thrilled for you.  I hope this news gives you the much needed peace to relax and sleep.  This is going to be just a blip in the road and a new outlook on life.

 

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Great news, hellcatbaby !  

I am so happy for you and yours.

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Well - I think my new profile pic is appropriate lol! And sleep I did! From 9:30pm til almost 4am and it was a GOOD SLEEP! The mind and body feels so 'recharged' especially after yesterdays news. Today after my treatment I have my weekly follow up with the Radiation/Oncology team. Just the basics to go over how I'm feeling and to check my cognitive responses as well as to see how the trial medication is going. So far so good so nothing to complain about. Just still taking it all in stride one day at a time. 

 

It will be a busy week for me after today. The A/C people will be out here Wednesday for the change out. So for me that will be a chill day as they have to turn off the main unit so me, my mom and the pups will be chilling in the den with the window unit until it's completed. A nice Netflix and chill day - maybe I can get her to watch Deadpool with me as she's never seen it!! 

 

Then the following days I will spend sorting and cleaning my soaping detash supplies and getting those packed away for the buyer. Whew - that will keep me busy for sure and quite the sorting job but it's good therapy and it's has to be purged. I have so many candles and wax melts I've made that smell so good! I want to burn and smell them as I've always used 100% soy wax, but it's the fragrance oils I'm not so positive about considering smell/the chemical aspect and my lungs - so why chance it. I'll gift those out in appreciation to my WHOLE TEAM! A nice goodie basket of handmade soaps and candles. 

 

I went out and bought me a mini smoothie mixer which the 'blender' part also converts to a cup so I can put all this good fresh fruit into a nice single serving and blend away! I think I'll start with the strawberry/blueberry, banana, mango and pineapple mix first. Then make me some nice frozen ice-pops for later. Can you tell I'm really getting into this whole healthy - you are what you eat kick lol. Yesterday I tried lentils and brown rice for the first time and I'm just amazed at all the good food I used to snub!! But better later late than never and my BF is a great cook so that helps a lot!

 

He's also ready to make the move to hop on board - snub the smokes and the drinking!! Even though I'm facing what I am he's just over the moon at the changes I've made in every aspect of my life in spite of it all and hopefully that will give him the strength he needs. He wants to wait until after my radiation before he attempts the 1st step as we all know how stressful quitting anything can be. I told him I would support him every step of the way and that together we would get healthy and happier together! 

 

I'm really looking forward to today - I finally feel like things are calming down with the body and mind, the house is nice and settled and everything for now (knock on wood) is just coming together like a well oiled machine for the first time in ages and the 'teamwork' between home and the Dr's are starting to show. HARMONY! Yup a good day indeed!!

 

Again - thank you all so much for your encouragement along my journey! Keep up the good fight - throw out the trash and keep the lessons of the day to carry on!!!! Team DEADPOOL!!!

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You go girl.   That positive attitude got you through the fear and unknown and it is going to carry you through to the end.  It is so exciting watching you make all these wonderful changes, in you life.  You have become a bright spot in my day.  I love to start it with your posts.  

 

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I have to agree with Linda hellkat, you're posts start my day too :) I'm in awe of your strength and positive attitude through all of this. You'll have to let me know how your mom likes the movie, I'm guessing she'll end up becoming a fan too. 

Team Deadpool!! :)

 

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I don't want to talk above my pay grade here but...I think your attitude and outlook are going to be great assets going forward.  I believe that our mental state directly affects our physical condition in ways that people who are far smarter than me don't fully understand yet.  The mind-body connection is not just symbiotic but also mutual.

 

You've done yourself a great favor with the way you've handled recent developments in your life Hellkatbaby.

 

Stay strong and fight on.

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I love your positive attitude...respect to you ...your my hero xxxx

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Thank you so much everyone!! Ya'll really do lift my spirits as well and I so appreciate that. I have created my blog which can now be found under TEAM DEADPOOL - hee hee. That way I wont be flooding this thread and have a new space to post, ramble or do whatever I wish! 

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Posted (edited)

I am so glad you are with us @hellkatbaby 

So happy you quit smoking, you need smoking like a hole in the head what with all you are going through.

Will definitely check in on TEAM DEADPOOL and watch you get healthier and stronger every day.

You are touching a lot of people with your experiences.

Be well, baby. Stay strong in your quit.

s

Here is the link to TEAM DEADPOOL  for those on devices that can't see the list of current blogs.

 

 

 

 

Edited by Sazerac
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Go Team Deadpool, and look out world, there's a Hellkat on the loose and she's just getting started!  

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