I WILL NOT GO QUIETLY @cherrydee32-blog-blog - Tumblr Blog

I'm not even supposed to be here right now...

What a strange feeling to read from leading experts that I'm past my expiration date...LMAO...All I can do is laugh.

Really....I must have washed that date off somewhere because I'll be damned if I can find it.

Today I have to do some research and make some calls to some people in order to a) get all my records in one place....I did have that done at one point but damn I thought I could just let it go. I mean after 6 years why should I keep all the records....OH YEA, I"M PAST MY EXPIRATION DATE, I'M SOME KIND OF FREAK OF NATURE...

I'm not sure I can even discuss this further it might warrant an explanation into the X-files someplace.

Steroids vs me or are they on my side?

Well, coming off the low dose of steriods I was on was VERY unsuccessful. Gave an entire week to the "Can't get out of bed" person. Cancer sucks for sure and WBR (whole brain radiation) causes some swelling which of course makes getting out of bed a HUGE problem if you have started coming off the stuff that is causing the swelling to stay down. Now all I can say is that my brian is running 100 miles an hour but my body is saying...STOP!!

Since reversing the process and trying to get back UP on the "ROIDS" it has been too long of a flip. Literally almost paralyzed for 3 1/2 days. I couldn't even move to put socks on at one point.

Good news is, it seems today is better. Well, I'm not up for the day yet but getting there. After going back to nap a bit...LOL

Hope to see you out and about.

my view on time limits

Cover you eyes if you are sensitive....

FUCK TIME LIMITS! I AM NOT A PIECE OF PAPER, I AM A HUMAN BEING WITH A SPIRIT OF MY OWN.

Nobody knows me better than me and I am going to BE here for a long time.

Anyone dare tell me NO? Ok than...be about your day!

Hugs and love to everyone, even if I don't really like you, you deserve to at least be respected for the air your breath, maybe....ok Carri, now you are just being a brat!

BE GONE MONSTER THAT IS CANCER!

Roid run insomnia....very random thoughts

I feel like I am getting so much accomplished lately but I know I it is because I was in the hospital for 10 days. It's weird too, because I keep saying it was 8 days til I looked at a calendar.

I'm not doing THAT much but...for me, that is making me crazy so now I have all this mental energy that I don't know what to do with and my mind is racing and maybe I am just feeling like I am running out of time, but I don't want to let myself believe that. There are so many things out there that I have yet to experience and do.

Its hard to go from having multiple options to hearing those options are no longer the same options because of where the cancer has decided to start lingering. It hasn't past the blood brain barrier and they are taking care of that to hopefully make sure it does NOT get past that barrier.

I have kids to raise and see graduate and grow up, a step daughter who should be setting a wedding date soon. And a husband I just don't ever want to stop kissing and would appreciate the nasty medicine taste to turn into stripper cherry bubble gum flavor he loves so much. LOL...that's a lie, he loves to kiss me too, mints or not. I try to keep him pleased.

Having to explain to my youngest kid why he hasn't been to the Detroit Zoo today was hard. I mean he has been to Fort Wayne zoo, and LegoLand in California, he has flown to the Rockies and has had just as much adventure in his life as the older two but he is younger. It's hard to plan for a Tuesday zoo trip when I might only have a few hours of good that day. Why ruin it for everyone? If I send them with friends or other family it is not the same as MOM. So two day trips are being tossed around to go spur of the moment, Henry Ford Greenfield Village (I have a pass) AND the Detroit Zoo. I've heard Toledo is great too. I want to take Domi to Hands On museum in Ann Arbor...but I have to have supervision now...ME...I have to be supervised because I could have some sort of episode. I remember when that was just needing a designated driver so I could get wasted and fall all over my husband! Life is so different now.

Freedom has been stripped from me in so many ways...but I know that if I want to fly to New York City that I have an entourage waiting to fly with me and bring a wheel chair if necessary.

This is far more complicated than flying the kids (all three) to Cali last year and zipping around in the little Hydai or whatever car. NewPort Beach, Lego Land, Hollywood, and Santa Monica Pier. Plus Chy got to go to VidCon with my Uncle Barry whom I hope I have thanked over and over because it really was a gift for her.

This year I wanted to try ComicCon...no dice! I have an event I want to attend in New York in October. Hope that happens.

I think about other people my age, my neighbors even, planning camping trips and cruises and houseboat adventures, just to go spend some time and make memories. All I want is a million more daily grind memories, I don't need lavish things or cruises or cars that turn like they are on rails. I really don't, I want time. I want to go to Great Wolf Lodge and know that I will feel well enough to get my now size 6 ass in a bathing suit and go play without puking.

I get this sounds like complaints to some people because each day is a gift and there are people grieving all over the world about missing someone. I am one of those. I lost my mom at 6 years old to cancer. I was blessed enough to have a wonderful woman enter my life and raise me and and never try to replace her. I value her so much for all she does and puts up with on a daily basis.

I want to go to Hawaii and also stay right in the Disney resort with my kids, park hopper style, the same with Universal and the Harry Potter Park. Dominic is SO into Harry Potter right now, I want to plan it soon. But I can't ride the roller coasters now, so I'll deal with that.

So yes, the little things matter. Doing my own laundry! Refinishing my great grandfathers book shelf to match the rest of my bedroom furniture. Getting some things done around the house. Maybe if I think of all the things I DID accomplish today I will close my eyes and know that it will be ok. I even got a 1/2 hour in of reading and first grade readiness flash cards with Dominic. I also had a pretty good chat with my son Tyler, who is hard to get nailed down to even an OMG conversation lately. My boys are great, they really are. Having just them here is really strange without their sister.

Well the ramblings are helping get my eyelids to be heavier, maybe this can be therapy for a little bit.

Despite the title of this blog, well it's been too quiet!

A lot of news to share about cancer and how it makes sanctuary in the spinal fluid. I had a terrible month and landed 8 days in the hospital. Have lost all my hair again...well I am over that a LOT better than when I first was diagosed.

I can't make this long because I can only do so much in a day and learning new limits is really hard.

The last two days have been great! I actually DROVE...I had been grounded because of the double vision caused by 6th nerve palsy which is the whole reason they found this almost undyable matter in my head pushing against my nerve causing double vision.

It's such a long story and I will tell it another time. Others are still getting wind via phone calls and posting all the deets here is not appropriate until certain people are told. If you catch wind of this and want to get the real story and have my number....please feel free to call or text and we can set up a time to chit chat. I'm back off to bed. Kept the necessary meds down and sleep is good for me.

Virtual Hugs to everyone who has to needs one.

Change in Protocol...really? Am I supposed to keep track?

Well, Doxil got the boot. It just wasn't doing ALL of what it should. It's called MIXED results. Meaning it was working on bone enzymes and tumors there, also on the area near my sternum and a met on my liver that went sort of rogue but not really. The soft tissue tumors on my neck are kinda getting a bit out of control and there are other soft tissue things showing up on my belly and one on my back. Not sure what these are but we will treat them as if they are nasty for now.

So, I have been switched to weekly Abraxane. 3 weeks on, 1 week off. Yep, this ruins some of my plans I wanted to do this summer but actually I'm not sure I was up for what I was planning anyway.

I got the first infusion of the drug yesterday. I always ask for IV ativan when I do a new protocol so I can sleep through the first day. So the second day, I am up typing here but still very stressed and kinda depressed. I suppose it is normal to cry a lot when you feel like life is playing cruel jokes on you.

I have lined myself up to be a lab rat so many time. I am letting them do so many different types of treatments on me trying to find the one that works. I want to live! On the back side of that I hear about people that don't want to fight anymore. I respect that to a certain extent but I often wonder why I cannot just be ok with my fate. Weren't we given free will for a reason? Why should I settle on this as my fate? I am not sure I am really a believer in fate or destiny! Free Will is a much better choice!

I choose a longer life, and if that means playing with cancer killing cocktails til they get it right than sign me up. I am not done figuring this out.

I also want those who love me to help me with this one thing. DO NOT LET MY ILLNESS STEAL YOUR LIFE!! I know its hard to stop worrying that the other shoe will drop, but guess what? There is NO other shoe...and if there is, it will drop when it is going too and there is not much that you can do about it, so stop worrying and have fun with the life you have. Standing around me waiting for something to happen is not worth it! Everyone in this world is cheated out of someone they love...but for now, I am here so set your sights high and fly to your dreams. I'm with you always in spirit whether I am in bed sleeping or if I was working 50 hours a week like I used to. It is so important to me that my family keeps up the normal as much as possible. Because in those ordinary moments a million perfect little memories are born!!!

So much for not being quiet

So this has been one hell of a 2013.... haven't been touching base with this blog like I should. I have been hospitalized twice, this first time was right after my father in law's funeral. He too was taken by cancer much too soon. I am currently supposed to be on a 3 week cycle of Doxil with shots of xgeva every 4 weeks. This week I had to give my body an extra week to get my white cells up. I'm not sure if there are any signs of it working, and am waiting on some results of my cancer marker tests. Next Friday it is back in the CT machine for more images! I guess that is why I have been quite. The computer is in the living room and I am sleeping a lot, when I am not sleeping I am trying to catch up on things I need to do. Painting, gardening, getting my daughters room done so I can start on the boys, paying bills, you know, normal full time mom stuff. I wish I had a job but then again who will hire a stage 4 cancer patient that needs a lot of sleep. On top of it all my back is acting up again. Sorry for the complaining, that is why i am not sharing, it is just nothing new and nothing exciting and quite frankly rather irritating to me and boring to others I'm sure. More late when I feel I can contribute more than this to the interweb!

What is that saying about not planning ahead?

Oh yeah, "lack of planning on your part does not constitute an emergency on mine"...yep that's it.

It amazes me how people just fly through life without a plan. I mean NO PLAN whatsoever. Then when everything blows up in their face they are like "HELP ME"...it's almost like the boy who cried wolf accept that they have been warned that whatever they are crying for help about has been coming.

What are you supposed to do with people like that? You love them so you want to help, but they were told many times that this day would come and that if they did not try to get a plan together that it would be extremely hard for people who have no other choice but to plan ahead to be there to help them.

I am not talking about emergencies, I am talking about things that you KNOW is coming but don't want to deal with...

I have a team of doctors that totally know that I am just not good at immediate change, I have to get used to certain things before I jump into them. My doctor currently sees that IV chemo could be in my future. She knows this about me, so she is letting me know the steps we are facing before this happens. So unless something else comes off clinical trials or a clinical trial opens for my particular presentation than IV chemo is in my future...probably more near future than distant.

My three children have stuff to do....I can't just up and become dysfunctional. We need to be able to lean on our family for when this happens. I need to have the people around me positive and not falling down. This is a hard disease to fight that is for sure. If you have the capability to plan certain things...get that done because the nitty gritty of this crappy illness certainly demands that you have all your ducks in a row.

Being a Cancer Patient at Christmas

Well, there is a lot that goes on having cancer during the holidays....The first things is that in the 5 years I have been fighting this our family has been adopted a few times...That is a strange feeling but it makes us take note that there are good people in the world that want cancer to suck less for those fighting it. Sometimes people I know with cancer call those "the cancer perks" because they are trying to find one thing about cancer they can say makes one day with this illness worth it. Those days when people around you are not just waiting to hear news of your impending death.

And even on the best days, those who love you are always wondering when it will go down hill. They don't mean too. We all have defense mechanisms in place, and they are there for a reason. The fact remains that the longer you fight cancer, the harder it is on the people around you. The roller coaster is a rough one that is for sure.

I've been lucky that I have had times during these 5 years where I have been able to be productive and get things done...so I start kidding myself trying to say...Oh I think I could go back to work...NOT...I then get planted in my bed for the next 3 days for even thinking it I think.

I'm pleased to say that my in-laws have made it back to Michigan where we can better look after them. It was really hard to do from so far away.

The latest in the Afinitor saga is that it causes sores all over...the worst are in my mouth. I have two cold sores that are unlike anything I've ever seen. The hurt SO bad that dealing with the pain during the day is exhausting...all I want to do is sleep so that maybe I will wake up and they will have gotten better...

Speaking of going to sleep...think I'll head that way again now. Grrr..my mouth hurts!

Being a cancer survivor when treatment is not going well for other cancer survivors...

I think the term is survivor guilt. I have been taking my new medicine Afinitor for a little while now and it seems to be effective...I hate to say something early on but it really does feel as if the meds are softening the tumor on my neck. Every little thing is worth celebrating. My father in law has throat and mouth cancer. He had surgery in April and is still dealing with the feeding tube and the trache.

We found out yesterday that there may be more surgery in his future and he sounds very defeated. My husband is trying to get him to move home so they are closer and so we can assist in ways that will help more than just a card, skype and maybe a once a year very short visit.

For me to hear that, knowing that I think my protocol is working sometimes works against me. I start feeling as if God is playing a sick joke on me and the only way I can survive is by watching people around me die of cancer.

My mind says this is a stupid way of thinking and I know that is not how I should feel. But it is how I feel.

I just hope and pray for him to recover from this stupid cancer.

Being sick as a mom of 3

It is SO hard to be sick and be a mom of three active kids. I don't have time for medication that makes it hard to function.

That being said, today is MUCH better than the last two days. The problem is the casualty this time of me being sick is our beloved cat Louis is outside with no front claws and hiding somewhere. We saw him this morning sleeping pretty comfortably on the deck...probably the boys left a door open when I was sleeping for the last two days and he wandered out...He normally doesn't but since the boys don't pay any attention he was left outside overnight. At least we know he was alive this morning and probably hiding under the house somewhere. Cats can certainly find the best hiding spots that you would never think of. My hope is that after he sleeps all day he will show up this evening. There is cat nip at the door he was closest to this morning. My husband saw him and went to get him but startled him and he ran under the deck. I am quite worried today which is not helping the headache...

The afinitor side effects seem to be subsiding other than the headache. That first day was couple days have been rough and I am just taking it hour by hour at this point. Sometimes that is all you can do...

Cannot answer the cancer drug questions, but I can only relate because of the seizure drugs piled upon me and how they interact and it's not a pretty dance mostly. I, too, end up having to sleep so much. But, my neurology actually needs it. I have to let guilt go. Guilt doesn't heal us, right? Gotta be harmful, if anything. So you rest every time you need it. Know I am resting too. And you keep your kick fire, spit fire spirit. I don't think anything can outlast THAT. ;-) Love and hugs. Lisa

Thank you for that....it's so hard to start a new drug...but then my husband freaks out because I just start it...no warning, nothing...better to just jump in the deep end right and hope for the best.

New drug combo #... Damn, I lost count!

So, I had my monthly Oncologist check up today.

The list of side effects for this new drug is insane. The drug is called Afinitor, I am on my second dose. I'm not yet ready to say that the second day is better than the first but I am always hopeful.

My leg was starting to hurt prior to the switch, probably from all the running around I was doing with the kids. So that is a big pain in the ass..literally...and down to my heal and toes...circling around my knee. OUCH!

So the Afinitor is causing dizziness, irritability, tears, headache, which all lead to nervous tummy issues and a little nausea.

I'm taking it at night so that I can sleep off the worst off it, backing it up from 11 the night before to 8:30-9ish last night.

I hope I am one of the ones that gets better after a few days, but there is a group of people that don't ever feel better and then they have to make the decision on whether it is the right drug. Right now I am giving it an entire 30 days til I see my doc again.

The 5 year mark is coming up. Mostly people think that is significant because of if you are 5 years clean you can call yourself "in remission". I'm not sure I will ever be able to be in remission and that is ok, I can live WITH cancer as long as I am living.

Fear is a pretty horrible feeling. Sleeping all day every day isn't a great on either. I feel useless and worthless and a burden on everyone. Everyone around me will argue that point with me, well except maybe one or two people who like to hold everything they have ever done for anyone over their heads. None of that matters at this point. I want this drug to work, it HAS to work.

The kids are hanging in there with this. It is normal for them to see me down. It doesn't suck any less though.

So I am off to sleep some more and try and let this medicine do its job.

If anyone out there in cyberland can answer some questions about the Rife Machine or Protocel that would be great.

Later gators!

To Blog or not to blog

So I have been thinking of what to write here...I always want to say something correctly, something that means something, and then I end up not writing anything. When in reality, "I will not go quietly" means I do just that. I talk about my daily life and how I live with stage 4 breast cancer.

Because that is exactly what I do. I live. I do laundry, sweep floors, sleep a lot, I cart my kids in multiple directions, and I love my husband dearly. I fight with my kids over grades and getting their room cleaned, etc, etc.

The latest in my never boring life is the decision of whether or not I pull my 98 Goalie off of this team that has three goalies and are not using my son properly. Tyler is as many refer to him as "a good little goalie", I should link some video in this blog. He isn't quite 5'3" yet but he is growing. The thing about Tyler is that he can MOVE, he plays his position very well. The problem is that the coach was not using him correctly.

My father has some say in where Tyler plays because he is the one that has helped pay for Tyler's training and playing time. Tyler tried out for his Varsity team but there was already 2 goalies so for his freshman year we have to find a team that will use him properly. I think we have and am excited to move on.

My daughter getting ready for her ice show try-outs and she will be skating for her high school skating team this fall as well.

My youngest son loves hockey as well and he plays for a mini-mite team in the area, and today he got the goalie bug. I do hope that he will outgrow it and just play defense or forward.

So the last week has been filled with ice rinks and more ice rinks, and of course writing checks for those ice rinks.

In terms of the cancer, yep that is there every day. Fatigue, pain, etc. But life does not stop and that is why this blog has to be more about my life than the cancer.

Here's to creating and writing and actually not being quiet!

Glad you found me on here too! :-) I LOVE your Bras for a Cause photo! If you ever write a book that shot must be either the cover or your author photo. It's just too great!

I would LOVE to write a book. I was thinking of being part of NaNoWriMo but I would need a partner to make sure I was on point. I wanted to write a story of my experience with cancer and parenting.

Moved and continuing to fight the monster...

The last cat scan showed that there are tumors on my neck and near my sternum...soft tissue tumors are not as horrifying as organ tumors and I actually have been feeling really great this summer and fall.

We moved and I in the last 6 weeks I have been running and going almost as much as I did when I was healthy and working...almost. I crash often but seem quicker to recover. Of course I am not working on top of all the running and I know I would never be able to do that.

I have painted the kitchen, dining room and living room areas and had help painting the staircase. I did the hallway, the front foyer and one wall in the great room. I have kept busy and have lots of ideas I want to see come to fruition.

My eldest is taking her pre-SATs and ACTs for college acceptance and my baby started Kindergarden this year. My goal is to beat this damn disease for as long as it takes and for sure not give up til the baby graduates from college or longer.

I' m scared though...It's hard being looked up too by so many people because I am constantly worried about the what ifs. What if I fail? What if this monster is too strong?

I am not giving up and I am not getting negative, living with a healthy dose of fear is ok as long as it doesn't win.

I am looking into a supplement called Protocel but it is over $100 and just not in the budget. Maybe after the holidays I will get some. People have really given this stuff a lot of props. I would like to try it. I have a call into the lady that sells it in my area. Anyone have any luck with this stuff?

Well, back to getting stuff done around the house. I love where I live now. Such a beautiful surrounding and great neighbors too.

thedailywhat

Dear Ann Coulter of the Day: After Ann Coulter referred to President Obama as a retard in a tweet during Monday night’s presidential debate, Special Olympics athlete and global messenger John Franklin Stephens penned her this open letter:

Dear Ann Coulter, Come on Ms. Coulter, you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult? I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night. I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have. Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next. Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift. Because, Ms. Coulter, that is who we are – and much, much more. After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV. I have to wonder if you considered other hateful words but recoiled from the backlash. Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much. Come join us someday at Special Olympics. See if you can walk away with your heart unchanged. A friend you haven’t made yet, John Franklin Stephens Global Messenger Special Olympics Virginia

[specialolympicsblog]

valerie2776

hell yeah

fishingboatproceeds

Hey, Anne Coulter, here is some commercially available burn cream.

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I WILL NOT GO QUIETLY