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TEAM DEADPOOL

hellkatbaby

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Welp - I guess it's time to start the blog and not clog up the threads: This is my 2nd try but it doesn't seem to show up?? But anyhow!!

 

TEAM DEADPOOL is officially GAME ON! 

 

Today was another good day! I'm 1/2 way through my radiation treatments with only 5 days to go (excluding weekends)! After this AM's treatment I met back with my radiation/oncology team. They have reduced my steroid intake to only 1 pill a day which means the treatments are doing their job. They plan to wait 60-90 days for my next MRI to make sure everything is A-OK and that is the best waiting time to get the best results. He knew they were waiting on that 'thumbprint' gene however had not known that it was confirmed and immediately ran out to check my files. When he came back he seemed as relieved as we did yesterday! 

 

He wanted to make sure I wasn't having any side effects or vision changes (which I haven't) and advised again that in the up-coming weeks I may start to see my hair falling out. Again - small potatoes but considering I have long thick hair and they keep looking at it like 'we just don't know' and I also feel they don't want me to 'lose' site of the fact that it may or will happen just so I'm prepared. But in all honesty I do expect to lose it - and that's OK and the least of my worries at this point. All my vitals were totally normal and now that I'm down to just the 1 steroid a day sleep should hopefully come a lot easier now and I'll be over the whole 'zinging' around with this unfiltered energy at odd hours of the night. Fingers crossed!!

 

I made my 1st frozen fruit juice pops this AM and got to try them when we got back - I have to say I'm impressed with myself lol. My mom even liked them and said it took her sweet tooth edge away. Later on I cut up some kiwi and had her try it, she actually ended up stopping by the store on her way home to pick some up she liked it so much! You go mamma!! 

Tonight we dine on whole wheat spaghetti - this will be a 1st for me so we'll see how it goes. A nice fresh salad mix with berries, nuts, a tad of parm cheese and homemade dressing! MMMM - cant wait!! 

 

I'm just feeling really good!! I didn't push today and even rested and recharged which was what I needed as the last thing I need to do is burn myself out. All positive thoughts and trying to find that balance with everything seems to be pulling together at last. Gearing up for the next level so to speak. 

 

I hope everyone has a great night and no matter where you are in this battle never give up - never give in or Team Deadpool will come kick your ASS!!!!

 

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Not sure how to make a 'new entry' yet w/out starting another blog so I'll just carry on in the comments - keep it simple. 

 

So 3:00 am finds me again 🤨 - ugh. I guess this will be part of the new norm for a bit, but I was really hoping I could have stuck it out a few more hours. I felt as if I were double dreaming which was really strange. I guess with all that's on my mind it's not surprising. Part of it was about my treatments, nothing bad but just feeling like I had already gone today and came home to realize HA! Jokes on you it was just a dream! And the other part was about while at the center they happen to run out of A/C (since mine at home gets fixed today) and how they were charging us extra to sit near a window unit while waiting and charging our insurance for it. Just kind of the crazy stuff. Next thing I know I'm staring at my darn clock.

 

Speaking of insurance and knowing how to be your own patient advocate. Again, being a part of the health ins. biz we see a lot of messed up stuff as far as how the business end runs. Again never ever mistake anything medical or insurance wise for charity because in the end it all comes down to the mighty dollar - PEROID!! Standard protocol for certain things is to DENY, DENY and DENY even if there is no reason to DENY. For example - this 'Pill' that I am supposed to take was DENIED. I received a ROBO call from the pharmacy yesterday saying there was an 'issue with my insurance and my medication denied.'  Well I KNEW exactly WHY they denied it and immediately contacted my Dr's to explain this 'conflict of interest' between the pharmacy and my ins. co. and the Dr's where very thankful that they did not have to do any extra leg work of calling around to figure out WHY or HOW a life saving/changing pill would be denied?!!

 

Without giving out too much detail this is all I can say. Any time companies merge to where a pharmaceutical co. is now running an insurance co. is a great conflict of interest.  Naturally all other pharmacies become NON-PAR as this 'new' co. basically forces you to use them and them only which is not always 'ideal' for the member/patient/dr's. But again it's the nature of the beast. We get many complaints from our OWN EMPLOYEES as well as members about how they are out of the certain medications constantly and making people wait to have them filled.

 

Well the average Joe not knowing the ends and outs stresses and frets and waits not realizing or knowing that by law they can only pull that crap once. After that there is a number you can call and they HAVE to 'pre-cert' certain meds to another pharmacy at the PAR RATE! However again, unless you know the ends and outs - you wont really know. And it's sad. Going through what I am facing and hearing PT scan denied/meds denied/MRI etc is frustrating enough because I KNOW it's all BS. So as a member advocate I beg you all to please READ YOUR POLICIES all the way down to the very fine print with the largest microscope you have!!! When your ins. co tells you NO - KEEP PUSHING! DO NOT ACCEPT THAT NO AT FACE VALUE. Another tip - anytime you go to a PAR Dr. or facility it is ILLEGAL for them to try and balance bill you for ANYTHING as they are paid at a CONTRACTED RATE!!!! Even if you insurance denies them something simple as a lab test  - THEY CAN NOT BILL YOU UNLESS YOU SIGN A WAIVER!! Be very, very careful regarding these 'waivers'. 

 

Another great tip - WAIT FOR YOU EOB FROM YOUR INS CO. BEFORE STRESSING ABOUT A BILL. I received my 'ER' Observation bill stating I owed over $1500.00 even though my deductible and out of pocket are fully met, par facility, not signing your waiver go stick it up your ARSE!! And of course on a closer look at the 'bill' found they had not even submitted he claim to my ins. co yet. Sneaky bastards. So when I did get my EOB it turns out that all was approved at their CONTRACTED FLAT DRG RATE - meaning you get what your contract states and not one penny more! If for some reason w/in that 31 day period I have to be readmitted it all still follows under that one flat rate and not a dime more. Sorry - I just had to get this off my chest DEADPOOL STYLE simply because a lot of the times the 'powers that be' literally tie your hands and I just can not and will not follow those misguided un-ethics. 

 

So now that those tips are out of the way - this AM I will drive myself alone for the 1st time to and from treatment. Since my dx my Dr's keep asking 'AND YOU'VE NEVER HAD A SEIZURE' WTH? So just that word has made me a bit cautious as if I'm going to have a seizure! And the LAST PLACE you want something like that to happen is behind the wheel of a car!! Well after a few weeks of being on steroids and my 1st few treatments and finding my new legs I would test myself and go the back way to the store or just up the road driving like a little old lady lol. Yesterday I drove to treatment and had my mom with me just in case. I did fine - radio off, phone off - no distractions as school has just started back and I pass one elementary school way under the 15 mile per hour limit. Just better safe than sorry.

 

But now that they have cut back on the steroid intake and let me know the treatments are doing their job has brought some calm in that area. If they thought something like that was a possibility now they would have not started to wean me off them. But I still plan on being very, very cautious especially with my crazy sleep patterns. 

 

So Team Deadpool is going solo tomorrow for a bit. I think this is a good thing for me another step/fear to over come!! Another good thing with the A/C people coming out is I will sort of be forced to do nothing but rest and recharge. But I need it!! It will give me a chance to break out some of my puzzle books or those Adult coloring books that I haven't had a chance to really dive into and get creative - stop buzzing around the house like sally homemaker for a bit so to speak. Wait - Deadpool doing house chores? Shut the front door!! LOL. 

 

But in all seriousness because I get to keep my mask - I'm painting it as DEADPOOL and I'm going to hang that sucker on my wall as a daily reminder to never give up, never give in and do everything with a special style and flair and wicked sense of humor behind it!! 

 

 

 

 

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Well I know where I am going to come when I have an insurance question.  I think the Cleveland Clinic has the worst billing system.  I can't tell you how many times I have received a bill a year or two after the fact.  I have gone and sat with their billing people and come out with my head spinning.  They are making it more and more confusing.

Hellkatbaby, I know you must feel exhausted but sleep has to be around the corner.  Radiation does zap your strength.  It took about a week and I was sleeping a lot.  

I love the mask idea.  Go Team Deadpool!

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Linda I can definitely tell my body needs the rest. I've been going and going in nesting mode for quite sometime trying to get everything in order and starting to feel that I'm pushing myself just a bit too much, starting to feel the strain in my back which I don't need - all those little details can wait for another day. I've got my recliner and pillows all set up, pups are being good in their crates so all I need to do is just chill out once I'm back from treatment and let everybody else do their job for the day. 

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Pups are in the crate and being good!  I have two that are driving me crazy.  I have never had two dogs that feed off of each other looking for trouble.  They are white goldens and they are 1 and 1/2 years old.  My husband tells me they are teenagers now and should be getting better.  I truly wonder.  

I am glad you have those fur babies.  They sure make you feel loved.

You have had so much thrown at you at one time.  The exhaustion will finally hit.  Rest today, sweetie, you deserve it.

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I hope you got some much needed rest and have a relaxing day, Hellkat. I was part of the 3 a.m. crowd this morning so I feel your frustration there.  The insurance issues and practices make my head spin.  There must be a better way than making people fight so hard to receive the benefits that they pay mightily for.  

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I

6 hours ago, hellkatbaby said:

Not sure how to make a 'new entry' yet w/out starting another blog so I'll just carry on in the comments - keep it simple. 

 

If I understand what you are saying, I think the only way is to 'edit' your original blog post and add on to the the body of the first entry.

When you "add blog entry"  it makes it's own separate little blog but, still under your umbrella.

But I like the immediacy of you carrying on in the comments...it's more conversational

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I'm actually enjoying this relaxation thing. My body can feel it and is saying 'UM HELLO - THANK YOU!!'  I don't feel near as tense or amped up and my back has already loosened up from just a few hours of chilling. We just put an an oldie but goodie - Indiana Jones and the Temple of Doom! Some background noise to take a nice nap to. The pups are being sooo good. Definitely some rib bones coming out tonight when all is said and done. 

 

I did really well driving myself today, was a tad nervous but did just fine. I used to take that daily route every workday before they moved our office so being familiar with the area and knowing the backstreets helped a lot. Only 4 more radiation treatments left and each one seems to go by faster than the last. 

 

And talk about a small world!!! Turns out the A/C guys that are here doing the install happen to be an old friend from high school and his two sons! On top of my mom being close with the owner and them all knowing my situation just makes me that much more at ease!! I told them to just take run of the house and if they needed anything from us to just knock on the den door and let us know. It's so funny how things just seem to work out when they do even when everything else seems against you. I'm just going to enjoy the good vibes of this week and maybe even catch a kat-nap!! 

 

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Well - 2AM finds me this time but that's ok. I got a lot of much needed R&R yesterday so it's a nice even balance I guess.  I just woke up with so many ideas and things I want to do that I just couldn't lay still any longer. After today's treatment I will only have 3 left!! They said within the next coming weeks I should notice a bit more side effects in the fatigue department and again the possible loss of hair. Friday will be my 1st 'alone' day and I plan to start the exercise program to help build and keep the muscles which also help fight the fatigue as much as possible. Not a bad routine to slip into my daily zipping around. I just need to make sure I recognize what my limits are and not push the bounds too much. 

 

That new A/C unit just rocks! I mean those guys really went above and beyond! The APCO-X air treatment system with the blue light at the top and bottom is like night and day! It even has a huge X in the middle for - X-MEN lol! But when they talked about the change and smell in the quality of the air of course I was a bit hmmm. But no lie - the air itself does have this 'smell' it's hard to describe. I don't want to say medicinal but that's the only thing I really can relate it to just CLEAN. The installers all have this blue light system in their own homes and admit due to my condition this is a higher grade and that I should notice a difference in no time. Boy were they right! The filter itself only needs to be changed twice a year so we have it all set up on a service plan to where they handle it all for us so no fuss no muss! You can even see the blue light glowing from the bottom almost like a night light in the hallway - it's pretty cool. 

 

The BF is ready to get painting on the inside of the house and knock a few rooms out over the weekend. I'll stay at my mom's of course but I need to find my color! You know it has to be all about the color at least lol! I figured I could grab me a nice filtered mask while at the hardware store and start caulking up some of the kitchen and bathroom seams. Nothing back breaking, I'll leave the base boards and bending over parts for him to do lol. Then hit the last few cabinets in the kitchen where all the missing parts of the pots and pans and odds and ends seem to end up and give them a good toss. Easy peasy stuff really.  The next ticket item on the list is a new - well newer fridge I should say. I know ours has got to be at least 15yrs old. Single door with all the missing trays and slats 🙄 definitely time for an upgrade to the double doors. Figured we'd hit the scratch and dent sale as were slowly finding with all the new foods there just isn't enough room to hold it all w/out it spilling out every time we open the door and it's just not functional any more plain and simple. 

 

And ah the recipes I've been googling and how to store my fruits and veggies properly to get the best shelf life is definitely my new 'obsession'. Another new notebook to add just for food!! I've been just making lists of the good vs the bad foods. Playing with all different menus for breakfast lunch and dinner. Trying to find that good balance so there is a nice solid 'weekly' menu in place that can be switched up with out having to put all this research into it later. Just really trying to get ahead and stay ahead of this fight I have. 

 

I've been trying to find as much as possible about this 'gene' thing as I can. I've tried to stick to the .orgs vs all the others for now and so far this is what I have found in regards to taking a pill a day vs the whole chemo route: with this 'lock and key' targeted therapy. Again - it's a deep rabbit hole and each gene apparently has it's own symbol (which I'm very curious to know about.)  My appt. on the 28th is to go over a discuss everything in GREAT detail. Exactly which drug, which gene, all the possible side effects and so forth. I'm glad my sister/notetaker will be back in town or that part!! But so far this is what I have found - again without plunging too far down that great rabbit hole just yet:

 

Monoclonal antibodies that deliver toxic molecules can cause the death of cancer cells specifically. Once the antibody has bound to its target cell, the toxic molecule that is linked to the antibody—such as a radioactive substance or a poisonous chemical—is taken up by the cell, ultimately killing that cell. The toxin will not affect cells that lack the target for the antibody—i.e., the vast majority of cells in the body. 

 

Now this treatment also has it's side effects as well - 

The most common side effects seen with targeted therapies are diarrhea and liver problems, such as hepatitis and elevated liver enzymes.  Other side effects seen with targeted therapies include:

Skin problems (acneiform rash, dry skin, nail changes, hair depigmentation)

Problems with blood clotting and wound healing

High blood pressure

Gastrointestinal perforation (a rare side effect of some targeted therapies)

 

This is where it's very KEY that I take care of myself - body, mind and spirit. Eat the right foods, doing my exercises and everything else on MY PART that I possibly can when it comes to my Battle Royal Deadpool Style. Just something I thought was pretty interesting. The more I find out the more I will be able to post about in greater detail. But until that appt. comes there's no use in fretting over what I cant control.  Like sleep - 😑 so I'll just 'roll with it' as best I can until then. 

 

I hope everyone has a wonderful day! The weekend is almost here and another beautiful sunrise awaits us all!! Team Deadpool over and out! 

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I want your positive outlook hellkat! And yay to only three more treatments :) Your air conditioner sounds awesome, we could sure use an air conditioner this week as it's been hot! There rare here on the Central Coast so we just have to suck up these hot days and eat ice cream lol. 

Team Deadpool for the win!!!

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Yay for cool, clean air.  Glad it worked out so well all around.  And now it's the 3 day countdown until battle#1 is history!

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I'm getting there and fighting the whole way! I was able to sleep after my post last night even if it was for a short few hours it was nice! I'm holding out tonight hoping if I go to bed later then maybe I'll sleep a bit more. Worth a try at least. 

 

This AM after treatment I finally had to cave and go to Walmart. I needed to pick up on the bulk stuff and figured since it was early in the morning it wouldn't be to bad. Of course I ended up spending way more than I wanted (again). I've really got to get that under control lol. But nothing I got will go to waste for sure! I did pick up a $5 T-shirt that said 'I rolled my eyes so HARD I could see my brain!' I figured I'd wear that to tomorrows treatment 😜.  And I tossed a few yoga type pants in the basket since comfy style seems to be the easiest.

 

Once I got back home though and started putting stuff away there was no stopping me - I was the little energizer bunny just pounding around the house. I feel like I'm going bonkers!! I must have re-arranged my kitchen cabinets 100x. Just crazy!! Like OCD type crap. I think I spent and hour on just arranging the spices alone.....WTH? I was such a creature of doing what I wanted, when I wanted and how I wanted and now I'm all Sally Homemaker and it's driving me nuts!! I want to go outside and take a walk but with the heat index at over 100*  psht - NOPE! But I cant stay in these 4 walls much longer. I mean these daily trips here and there are fine (as long as I leave my wallet at home) but I want OUT! I feel I NEED to be doing something I just don't know what that is yet. I mean I'm being productive and active at least but I feel I just need something more. I guess with time and patience I'll figure it out. Baby steps.

 

Tomorrow is FRIDAY!! Actually everyday for me is Friday it seems lol! And this weekend my son and I have our lunch or dinner date. That's that one time I don't worry about what I eat or think about what I'm going through - I just enjoy the time we have and make every second with him count. My sister should be back from out of town by next week and regardless of how things went before she left I really cant wait to see her again.  I need my team back!! After the weekend I'll be down to my last 2 treatments then onto the 'pill' two weeks after that. I don't really like to stop and think about it much - sometimes the rabbit hole can get too deep and that's a place I don't care to venture down right now. My focus is good thoughts and vibes all the way!! 

 

Hope everyone has a good night!! 

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One day at a time hellkat, it's working great for you so I agree there's no reason to look too far down the rabbit hole. As far as going crazy in the house, maybe you could visit your local animal shelter and take some dogs for a walk or spend time with the cats and bunnies. There's also rest homes with people who have no family who would love to see a positive friendly face :)

 

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Jillar - I never even thought of that!! See - you people just rock with the ideas! I might not be able to walk the dogs (the heat is really bad) but it doesn't mean that I couldn't help in some of the other areas where there need a volunteer!  Answer the phones or help with paper work or intake stuff. I will definitely check w/my Dr's 1st to see if that's ok even for just a few small hours a day! I think the biggest danger is me being a HUGH SOFTIE and accidently brining a new one home and saying BUT IT FOLLOWED ME!!  🐶🐾.  There was a time where I had sooo many animals people thought I was crazy. 3 ferrets, 3 cats and 2 dogs all at once! Now I was in my 20's at the time so it was much easier - but it all worked out and I loved every minute of it. My ex-husband was a tree surgeon so I've also raised baby squirrels and birds (I'm talking straight naked from the nest). The only thing he would not let me raise were the racoons which of course was the VERY thing I wanted to do!! I think the most 'exotic' pet I've had were sugar gliders - nocturnal but very cool! They even 'bark' and make this little noise that reminded me of a Pikachu character.  Whoa - talk about going down memory lane! 

 

But on the bright side of things this AM - I slept til 4:15am! I didn't go to bed until almost midnight but I didn't wake up in between like normal so it feels like a full nights sleep almost. Ahhh yes! But the dreams are always strange, this time one of the tech's or Dr's had food poison and had thrown up all over my lab work. I just remember in the dream them telling me 'had it been just one more day' then I would have ended up with it and everything would have to be pushed back. More of a nightmare than a dream, but at least I was able to wake up from that! Also I don't feel that anxious this AM either - the need to wash that last dish I had or wipe down the counter just because. Very nice indeed. Just a small cup of coffee for comfort before I start my day. 

 

Also now that my steroid intake has been cut in 1/2 for the past week I don't feel as hungry as I used to. Before I was eating constantly and now it's tapered off enough it's a bit of a regular eating schedule of just good healthy foods. Also those steroids have their other 'side effects' that I've been taking Colace for so I have that bloated UGH feeling going on as I literally 'sit and wait' lol. So if nothing happens by today I will bring it up tomorrow with them just as a side note. Also they did mention if they were to cut back on any medication it would be that trial drug Memantine. It's not mandatory for me to take since it's a 'trial' non FDA approved so I need to do a bit more research on that before I think of upping the next dose as scheduled. The side effects only list dizziness and caution while driving - but again something I want to dig a little deeper into 1st before deciding. 

 

No big plans for today yet so we shall see where the morning takes us (with my wallet at home!). My mom is very active at the senior center and Friday's are her Mahjong day and I told her NOT to miss out on that. I'll be fine and will manage to keep myself busy - or maybe even chillax a bit more. But she insists on being at every treatment and Dr' appt. (same as I would for my son) and I'm so grateful for her being there and being so patient with me when I sometimes tend to 'lose it'. 

 

Oh and during my mass cabinet clean out yesterday I totally forgot about these 2 cabinets above my fridge because there was always so much crap cluttered on top. Well turns out I found 2 jigsaw puzzles, a jinga game and a crossword book along with a tiny little note book to carry in my purse! I don't know how many years those have been up there collecting dust but they are all cleaned up now and ready to play! One of the puzzles is double sided so it's really tricky and I remember it took us weeks to get it together so that might be a nice relaxing focal point for my day. 

 

I hope everyone has a great weekend! Remember to take time out for yourself and to stop and smell the flowers🌞🌹🌻💐!! 

 

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2 hours ago, hellkatbaby said:

3 ferrets,

OMG a girl with ferrets.  My son has those darn pets.  I keep thinking he will never find a girl in his life.  He is 39 years old and has had up to 6 at one time.  I keep thinking, what girl is going to want a man with stincky ferrets.  Now you give me hope!!!!!!

You are doing so great hellkatbaby.  I wish you lived close.  You could come clean at my house lol.  

From someone who has done this battle, your positive outlook is amazing.  It is definitely hard not to go down that rabbit hole. I felt so numb through the process.  You are so fortunate to have family support. 

I will admit I am not a fan of the movie but TEAM DEADPOOL is awesome!

 

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14 hours ago, Linda Thomas said:

From someone who has done this battle, your positive outlook is amazing.  It is definitely hard not to go down that rabbit hole. I felt so numb through the process.  You are so fortunate to have family support. 

 

 

There are times that I do feel numb or overwhelmed. Today I had one of those moments right after my treatment when they gave me my papers for work stating it would be around November 1st before they would even think about releasing me at part time hours working from home. Just one of those panic moments where it felt so far away time wise and that deer in the headlights look would start to take over. And the rabbit hole just gets too deep to even look at.  But then I had to stop and think ok, it's mid August already so that would be about right for short term leave. 

 

I am starting to feel the fatigue from the radiation and I know that I'm pushing myself a bit too much with all this needless putzing and restless energy. I need to say it's ok to rest and recharge. Sometimes at night when I go write in my journal my hands will start to cramp and I'll have no choice but to stop and flex my hands and that's not good because I'm really just burning myself out vs filtering this energy to start those exercises for fatigue solution. They are not hard at all simple stretches and leg lunges using a chair for support, presses for your arms using the wall etc and just overall taking care of the body. Use mindfulness to calm my anxiety and hopefully get a full nights rest. It just seems to make sense now that I'm eating way better then I ever have in my life that I should physically start taking care of myself better. I know I still have a fight ahead and I want to be able to kick ass!! Even though I've been zipping around like crazy now is the time when I need to be mindful of my energy. Use it to help build and maintain that muscle. Not this senseless zooming and buzzing - that just has to stop. Tomorrow my steroids taper to 1/2 a pill a day so hopefully that will help with the focus. So tomorrow is a new day - I have my goal and I'm going to do it and do it right! Just being able to get that out was a big woosah moment. The mind is clear and calmer now and I can finally get some much needed rest! 

 

 

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2 hours ago, hellkatbaby said:

I need to say it's ok to rest and recharge.

Sweetie, you need to cut yourself some slack.  It is okay to rest and recharge.  You need to let your body heal.  It is okay to exercise but realize your body is going to react to your treatments and that you will need to rest.  It is also normal to feel overwhelmed.  I think writing your blog is the best medicine for you.  Were not just here to shore you up and help you quit smoking.  We are here to support you through this also.   Hang in there.  You are doing great.   

  

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:Thank you so much Linda!! 💃 just the words I needed to hear!! I made it til 3:30 uninterrupted so again not bad. I'm sure I'll go down again in a few hours and catch another hour or so of sleep or just rest.

 

No big plans for today for me until around 5ish - there's a lady on one of my soaping forums who happens to be local and decided to buy my entire stash!! So she will be stopping by to pick that up. I love the whole pay it forward thing. Her son is special needs so she's really going to be surprised at all the extras she will be getting that she doesn't know about yet all the Starwars and kid themed soap molds that hopefully he will love to play with in the tub. Not to mention all the bubble bars!! Who doesn't love bubbles!!  I just hope her car is big enough lol! Of course my BF will be here to help her load everything. 

 

We had to break down and buy a newer fridge yesterday. It seems my appliances want to give out one after the other but this thing was a good 15 plus yrs old and also on it's last leg. So we stopped by the habitat for Jax and found a really nice side by side with ice maker/water dispenser and tons of space and crisper drawers!! They also offer a warranty at a price that was a steal!! So out with the old and in with the newer - more room for all that good food and not having it fall out when we open the door lol. My BF and his coworker will be picking that up mid morning so we can get her plugged up and ready to xfer the food!! They plan on renting the UFC fight tonight and grilling out which is fine by me all I have to do is sit back and watch!! Yup it's going to be a good day!! 

 

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So I did start my new AM routine this morning and have to say - I feel really good and proud of myself! I found something nice on from the Livestrong foundation by the YMCA that seems perfect and low impact. I even have a new checklist to go down each AM to start my day. When I wake up I drink 8oz of water 1st thing. I don't chug it but just drink it and then use mindful breathing for 5 min. I make sure I eat protein, veggies and good fats for breakfast. Then rest and do some more mindful breathing before I start my exercises. Practicing my balance, the wall and clock crawl. Simple leg lifts to standing on one leg and then the other. Breathing exercises that are mindful for sleep and stress. They even have a cooling breath for those hot flashes!!

 

Simple but useful things like hand and toe curls and using a stress ball. I really think this will be so helpful in just my new daily morning and evening routine. (or whenever I feel like it) At the end there is a fatigue assessment test to take and I have to admit on a scale of 1-10 with 10 being the worst I would say I'm at a good 5 at the moment. Everything just feels right!! I know over time I will work myself up and get stronger and just the effort is the payoff! I think I have started to find that new balance and just had to share!!

 

My mind is so at peace right now and I don't feel all jittery like I have to go clean something lol. I just feel good!! 

 

 

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I love the way you meet everything head on and throw yourself into researching, learning, and doing all you can to get yourself in the best physical and mental shape for this battle, and I have no doubt you will beat this every step of the way.   So glad you have peace on mind and can relax today -- some days that's the best medicine of all.  After I read your post, I went and filled my water glass, so thanks for the reminder to keep up this simple healthful habit.🥤   Wishing you a great relaxing and recharging weekend, with some fun thrown in. 

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20 hours ago, Jordan7 said:

I love the way you meet everything head on and throw yourself into researching, learning, and doing all you can to get yourself in the best physical and mental shape for this battle, and I have no doubt you will beat this every step of the way.   

 

Thank you Jordan7 - I've always been one who really dives into strange rabbit holes however this one I am treading lightly as it can be a bit much to take all at once.

 

 I have been researching that Trial medication 'Memantine' and some of the case studies on it, especially after they said if they were to cut 1 drug that would be the one which made me stop and think 'ok wait a second - take it but don't take it.' Time to dig into that one - so all in all the studies are pretty much inconclusive. I then moved on to the side effects over time as you increase the drug dosage from one pill a day to 4 a day over time and they include: dizziness, headaches, constipation, fatigue, weight loss, swelling, increased heart rate and aggression.  So in MY personal conclusion that is a big fat NOPE. You can keep that trial drug to yourself thank you very much! I'll stick with my puzzles and mind/memory games vs putting my body through all that crap. 

 

20 hours ago, Jordan7 said:

I went and filled my water glass, so thanks for the reminder to keep up this simple healthful habit.🥤

 

It is a healthy habit that even I forgot about and does make a huge difference. It's funny how we forget just the simplest of things while taking care of ourselves. For the most part all I drink now is water aside of a glass of orange juice. I even picked up some protein powder to make my shakes for the afternoons to help build that muscle mass I'm going to need. I think today I'll try the milk, banana and peanut butter one first - mmmm. Of course I picked the chocolate flavor!! 🥰

 

Tonight we are doing a 'family' dinner vs going out. I'm having my son and mom over and just having a nice homecooked meal with everyone around the table and then break out the game boards! I might run by the goodwill when they open at 10 to see what board games they may have. Got to love a good thrift!!! 

deadpool-turkey.jpg

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1 hour ago, hellkatbaby said:

 

deadpool-turkey.jpg

 

 

I love this selfie of you cooking dinner. 😎

Yeah, water is amazing and I often feel noticeably better after drinking a few glasses, so no excuse here not to keep that habit up. Enjoy dinner and game night with the family.  

I'm definitely with you on dropping the Memantine if possible!

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2 hours ago, Jordan7 said:

I'm definitely with you on dropping the Memantine if possible!

 

Oh it's already dropped lol. I didn't even bother with it this AM as today I was supposed to up the dosage again. NOPE!!  Since it's a trial drug and not regulated they of course wanted me to at least try it but said that it was my decision and that it wasn't something I HAD to take. So I'm not even going to sweat it!! 

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@hellkatbaby  I love the selfie also.  

My kids and grand kids would take a homecooked meal and games over going out. I bet you are a super cook.

Quitting smoking, I had not patience.  I would have set the BF straight.  You definitely do not need stress in your life.

Puzzles and mind games are the best way to keep that brain in tune.  

I keep hoping you will finally be able to relax and get some good rest.  That is important in your recovery.

Have a wonderful day with your family.

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