Tag Archive | warrior

ZAPPED!!!!

Sep22

20160922_082725Welcome to the last phase of treatment!!  Yes I will be starting an additional anti hormone drug in November. But this will be the last treatment I have to physically go in and have something done to me over time. And to commemorate this I will be parking in front of the “Fire tree” in the garage.  So Radiation!  I have 32 sessions left after today. (33 in total) They never add and they will not release me early.  Evidently there is this magic number of 33 they come up with that gives the best results with doing the least damage.  If I miss one due to weather or because I need to take a break due to skin issues they tack those to the end. 20160922_101433

I did the math of the number of hours spent with Chemo and the number spent with Radiation…Chemo still wins with spending the most time there.  Roughly 56 hours with chemo and 16.50 hours total for Radiation.  I guess Radiation seems like more because its every day M-F for 33 days.  But the sessions are only 15-30 minutes. Note these times include set up time. But anyway….

I went in and I put the very stylish hospital gown on. (just top half). I had to wait in the dressing room until they came to get me. 20160922_103122 Then I met my radiology team. There are 5 of them. I lay down on my back on the cool machine and they get me all lined up against all my awesome tattoos. They drew some lines on my chest. Evidently they will draw these lines every day. The theory is they come off in the shower…so they will know!!!!  LOL  Anyway, They took some pictures of my chest and finally zapped me. They do the top side and then the back side. So they radiate the entire area every day. Then they put this thing on my chest (not sure what it’s called yet…I’m sure I’ll learn more over the next few weeks). This pad on my chest is to force a concentration of radiation to the specific tissue where Cruella was. That was it.20160922_105104

I asked if there was anything I needed to do or not do. Any special creams or whatever they needed to give me.  I was told to just not put any lotion on my body like 3 hours before radiation treatment. Use all natural soaps and lotions and if I need to use deodorant on my left arm it should be natural (no aluminum). But they will give me things as I need them as things come up.  There is nothing they can give me to prevent skin issues, but there are things I should not use to keep skin issues from happening. We’ll see how any side effects (if any) come about.  Would be nice if I get out of this without any.  So far I’m a little tired today and I had some water and it tasted like metal.  Could be completely unrelated but I’ll keep an eye on it.

So this is my thing for the next month and a half.  Whoo Hoo.

In other news I had PT and it’s going to be real important to massage my arms and chest area and lymphatic massage.  Radiation will tighten things up so I need to really take care of that area and my skin. They sent over the prescription for my sleeve and glove today.  If the glove makes my hand feel better I’ll get one for my right hand as well.  I’ll only have to wear the sleeve and glove when I work out, any type of exercise or when it feels swollen. Hopefully it will stay that way and we can stay ahead of it.  If it gets worse we will deal with it at that time.

 

Keeping up with trends

Sep21

This week is quite the week.  I meet with ALL the Doctors! (AND PT) Of course the song You Wanna Piece of Me runs through my head. But I’ve been noticing I am doing pretty good keeping up with the latest trend in everything. Seems all the cool kids are doing the breast cancer thing..so of course I have to be in on that.

So first up. Appointment with Dr. Evil. Also known as the surgeon. I just call him that because he put me in the most pain through all this. But he’s also the one that removed Cruella so I can’t really not like him…it’s all said with love.  So went into see him and he told me to get out of his office for 6 months.  So I’ve been released 100% (no more seromas….at least not enough to worry about).  I do have to see him every 6 months for the next 5 years to check the chest wall and lymph nodes. Good times.

Next up. Medical Oncologist. Overall things are good.  I wasn’t supposed to have blood work done today but we ended up doing some due to some issues that came up. Looks like my DEXA test came up that I have Osteopenia. I have never heard of this before. But it seems that it’s the step right before Osteoporosis. Most likely caused from the steroids during chemo and the Lupron. Not sure if I will be put on any type of meds to combat this but for now we add some calcium rich foods, supplements, Vitamin D and exercise.  On it. I don’t know how trendy this is yet…but now that I’m doing it I’m sure it will be more popular in the upcoming years.

“Osteopenia refers to bone density that is lower than normal peak density but not low enough to be classified as osteoporosis. Bone density is a measurement of how dense and strong the bones are. If your bone density is low compared to normal peak density, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop bone density that is very low compared to normal, known as osteoporosis.” …WebMD

Okay fantastic. So then I go back on October 17th for my Lupron shot. Yay…keep those nasty hormones shut off.  I also got told that I’ll be starting Arimidex towards the end of radiation therapy…so beginning of November.  This is an alternative to Tamoxifen. Just another medication to keep the hormones shut down.  We REALLY REALLY need to shut of my hormones…this will help prevent any cancer (of the breast kind) from returning. We will see. Again…cool kids get Lupron and either Tamoxifen or Arimidex. Because Arimidex is newer…obviously way cooler.  I get to do this for 5 years. (see a trend?)

Then I went to Physical Therapy. Good news my range is getting better. Bad news, got fitted for the lymphedema sleeve today. I’m going back tomorrow for another session and get the information to order my sleeve. It’s minor so hopefully we can keep it minor.  She has me doing the regular stretching exercises but also the massage to keep my lymphatic system moving. So for years I would exercise and especially when I walked for a long time or hiked my hands would swell up. Seems my lymphatic system hasn’t been functioning very well before all this happened.  So when they removed some of the lymph nodes it just put more strain on an already sucky system. What are ya going to do. I will even get a gauntlet…how cool does that sound?  Hey this seems to be a life thing…so how lucky is that?

Let me just say…the fashion statement of the Fall is the compression sleeve…I mean Serena Williams is doing it…and who doesn’t want to be like Serena?

serenawilliams2016openday6xbp6ry6pawul

 

 

Iconic – BITCH Get Off My Pole!

Sep20

As I was sitting here the last few days I’ve realized all the things that have gone on the last few years.  Two years ago on September 17th I had my hysterectomy.  I have a whole theory about how this is what threw my body into a hormonal frenzy which brought me to where I am today…but I won’t go into that.  I just remember at the time I thought that was like the worst surgery ever.  I think I would trade it now. So I take that back.

THEN last year on September 17th I left for New York to visit my cousin. See NYC/Madonna 2015 Trip for details.  I look back at some of the pictures and it was like they were telling me something… for instance:

20150918_125127 We were walking down the street and I just happened to pick out this picture and was drawn to it..so I took a picture thinking I may need to be reminded one day. Who knew that this was a message to myself in just a few short months.  I mean between the staying behind to sell the house while the husband moved to Montana, to the finding of the lump just 2 months later and trying to convince myself that it was nothing.  DENIAL!!!!  I don’t think I was really denial, it was me trying to stay positive.

Then there was this beauty:

What the heck possessed me to take this picture in the first place? I mean again…walking through 20150918_142219the park and of all the things to take a picture of…really?  The cosmos trying to tell me something. Not typically the type of picture I would take. But at the time it struck me.

So then we go to the Madonna concert. of course I had been listening to the entire album months prior. I mean one must be able to sing at least 90% of the songs at the concert you are going to!  But one song stuck out more that the rest for me.  Little did I know it would end up being my theme song through everything that has happened the last year. So I ended up playing this song as I left Colorado after being there for 17 years.  I played this as I entered Missoula, a place I had never been to but would end up calling home and a place my life would forever change.  I played this to every Drs appointment, every chemo appointment, going to surgery and will play it through every radiation treatment.  When I start to think I can’t get through something I play this to remind me to be Iconic.

Iconic – Madonna

[Intro – Mike Tyson:]
I’m the best the world has ever seen. (I’m the best ever!)
I’m somebody you’ll never forget cause I work hard and sweat in my tears. (Can’t be stopped!)
I’m never falling again and if I did, I’d come back

[Verse 1 – Madonna:]
If you try and fail, get up again
Destiny will choose you in the end
If you don’t make the choice
And you don’t use your voice
Someone else will speak for you instead
What you want is just within your reach
But you gotta practice what you preach
You pay with sweat and tears
And overcome your fears
Never let the fire inside you leave

[Chorus – Madonna:]
“I can’t”, “icon” – two letters apart
One step away from being lost in the dark
Just shine your light like a beautiful star
Show the world who you are, who you are

Yeah, there’s another part of you no one sees
There’s a burning fire that’s underneath
Baby, don’t you know you were meant to be
Born to be, meant to be

Iconic
Iconic
Ironic
Iconic

[Verse 3 – Madonna:]
Tell me I’m no good and I’ll be great
Say I have to fight and I can’t wait
Standing in the wings
A butterfly that stings
I will rise above cuz it’s my fate

[Chorus – Madonna:]
“I can’t”, “icon” – two letters apart
One step away from being lost in the dark
Just shine your light like a beautiful star
Show the world who you are, who you are

Yeah, there’s another part of you no one sees
There’s a burning fire that’s underneath
Baby, don’t you know you were meant to be
Born to be, meant to be

Iconic
Iconic
Ironic
Iconic

[Bridge – Madonna:]
Born to be a superstar, that’s exactly what you are
Born to be a superstar, that’s exactly what you are

[Verse 4 – Chance The Rapper:]
Alright
Firefly change when they catch ya
Wanna put ya in their net for their light glow
Yellow brick highway
Paparazzi piled up on the high road
They just turned the sun into an idol
They just want to see how high the sky go
Just to find how it feel to fall back
Madonna said I remind her of Michael
Steady blowin’ up my head
Blowin’ up my head
Put it on your wall
Put me in the school book
Put me in your laws
Put me in the desk
And in the synagogues
Firefly glow when they catch ya
Wanna catch ya when ya lights go dim
Wanna turn you to a letter in their logo
Wanna stick you in a jar with a pen
You an icon

[Chorus – Madonna:]
“I can’t”, “icon” – two letters apart
One step away from being lost in the dark
Just shine your light like a beautiful star
Show the world who you are, who you are

Yeah, there’s another part of you no one sees
There’s a burning fire that’s underneath
Baby, don’t you know you were meant to be
Born to be, meant to be

Iconic
Iconic
Ironic
Iconic

Iconic
Iconic
Ironic
Iconic

So in a sense the trip to NYC planned by my cousin was the preamble to my new life.  It was one last hurrah before shit got real. And I will be forever grateful to him for doing all that for me.  Even if he had no idea what it would all end up meaning.

20150918_182506

Oh and then I get all Holy Water (Bitch Get Off My Pole!)

 

 

Battle

Sep11

Its’ amazing how you get a dose of normalcy and then something happens to remind you that you are still fighting.  I have to keep reminding myself that I still have a long way to go here. I am getting stronger to be able to do radiation. I have no idea how that is going to affect me. From what I understand it may make me a bit tired, but nothing crazy. I’m starting to have the symptoms of someone who has sat around for a few months doing nothing.  Oh yeah…I had. So there is a lot of muscle loss and loss of muscle control. In part due to the lack of movement but also with the lack of hormones in my body it’s causing other rather unpleasant side affects.

So as I sit here this morning all upset and feeling defeated I figure I can do one of two things. I can sit around and be defeated, whither away and cry and give in to Cruella’s overall plan to destroy me. Or get mad and totally be like “fuck this shit.”  And kinda the way I am…guess which one we are going with.  So put the battle gear back on (you aren’t done with it yet) and get your ass in there and do something. Plan of attack: 1. Diet. I have alreadth-2y started to eat better, but this just enforces it. 2. Exercise! I have been taking walks around the property every day, but warrior mode time.  We are going to join the gym. My job from here on out is to gain strength both mentally and physically to be able to handle shit.

I talk a lot about the physical side, but mentally it comes and goes.  This part of treatment is kind of sucking because I have days where I’m on top of my game and I feel “normal” and then other days I crash and burn and can’t remember anything. So welcome to limbo. 3. This is why I also decided to do this Sign Language course on line. I’m hoping it will help with the brain part of it.  I also have this airplane game I play where you have to manage the incoming and outgoing aircraft without blowing anyone up.  So it’s using reasoning and deduction skills. Oh that and this cooking game….where you have to take orders and get food out on time. I think it helps.  Who knows!

I’m in the mood to RANT! RANT! RANT! but it turns into me just being a BITCH! BITCH! BITCH! and I’m trying not to do that any more.  See how long that lasts….

I just have to remember to put myself first still and not fall into other people’s drama.

Finding Inspiration

Sep6

I just got back from my weekly poking at the drs. I’m down to 5ccs now…I mean really? We are going to truly ride this out til the very end aren’t we. Whatever. So I go back in 2 weeks.  I’m starting to just accept that every week (now two) I’m going to get a needle stuck in my side to see how much fluid we extract.  Might I say from some of the support boards I’ve been on other people have like major fluid…not this measly amount to deal with.

Anyhoo…I was reading through some blog posts of fun exciting people like myself who have taken this little journey or are currently taking it.  I got to thinking about what my purpose is for even writing a blog. I started this as a way to keep my friends and family updated on my progress.  Of course after the initial “I HAVE CANCER” everyone is interested everyone is concerned.  Then as time goes on fewer and fewer people are engaged in your progress or what you are going through.  I know someone who was diagnosed with breast cancer that told me once she was diagnosed she stopped reading my blog.  Now, I was trying to understand that.  And in part I do. But I am such the opposite. When I was diagnosed I joined a support group though the cancer center and then the on line boards which led me to a lot of different people blogging about their experience. The people I met in Chemo were more than inspiring and I learned so much about not only my cancer but other types of cancer.  I joined a work out group for cancer patients where again listening to people’s stories inspired me and taught me event more. I listened to the struggles of other warriors out there and learned to appreciate my situation. I found comfort that other people were making it through the struggle. They were having bad days too. They weren’t always positive.  They weren’t always negative.  It made me feel that I wasn’t alone in this journey and that some of the things I was going through and feeling were okay.  So now that my friends and family are pretty much over this journey…Many of them think that as soon as you get through a certain point it’s all okay. What I’m finding is that each step has it’s own struggles and it’s far from over.  It’s a long process that I have stated before that not everyone has the stamina to hang in there with you.

So here I am in another limbo (lots of BAM! treatment….sit around and wait) I’m in Physical Therapy, still getting one stupid seroma drained just waiting until the day I can raise my arm over my head so I can start radiation.  So again….if my readership is down why the heck am I still doing this?  I think at this point it is first of all for me.  It’s been helpful to get my thoughts down and go back and re-read where I was at what time. I also THINK my hope is to help someone who has gone through this.  I hope that someone who has been diagnosed or is in some limbo stage where you are frustrated and losing hope that you will get to move on can see that there is a struggle to stay sane through the rough times. That everything must end at some point.  And you will get to move on; not always when or how you want, but you will get to move on.

I know I have a long journey left, and a lot of story to share ahead.  I’m starting to ponder the life after treatments and what the new normal will be like.  Will I always live in fear? Will I finally accept living each day in the present? Will I gain my self confidence back? Will I lose a part of myself? What will I gain?  What lessons will I truly take away from this experience?  And I think, for me, a big part is knowing that my story is not the only story out there.  There are others just like me who are asking these same questions.  I want to find some of these people and learn how they dealt with each stage, each setback, what kept them going. I want to share how I dealt with each of these things as well to hopefully help someone along just like me.

So to those friends and family who still read this silly thing every now and then…thank you.  For those who are going into war or in the war….I hope my posts can help in any way…and never be afraid to ask me questions if you have them.  I have found that you may not win every battle, but as long as you win the war it’s all good.

Side story here:  So when you have breast cancer by the time you go through Chemo and have surgery you are so over any bit of being discreet.  The dr has interns that he brings in…”do you mind” and I’m like “nope…there are still a few people left in the hospital who haven’t gotten to touch my chest yet…so why not”  And like I just take my shirt of before people leave the room….like seriously…nothing to see here…and like I said…so many people have looked and touched my chest the last year…who cares! LOL!

 

DEXA scan and French Fries

Sep6

We went to Spokane this past weekend.  Boy did I walk.  Friday hit over 11K steps. I haven’t done that since January.  So needless to say I was hurting a bit the next few days. We had a really good time visiting with relatives and seeing the sights.  Another state checked off my list.

Well when we got home there was a notice in the mail that I guess I’m scheduled for a CT scan and a DEXA scan on the 16th. Just when I stopped worrying from the whole NED (No evidence of disease) statement from my Dr I see the CT scan and start getting all worried.  So I’ve been a mess. The DEXA scan is a bone scan to make sure that the chemo didn’t mess up my bones that much.  I’m not real worried about that one.  But I’m confused on the CT scan.  I mean the dr said that I was clear…I was good to go.  Now we are doing this.  WHY!!!????  I’m sure it’s a formality but it made me realize that I’m going to be paranoid with every drs appointment and every little thing that doesn’t feel good.  I mean the last few days I’ve not been feeling all that great.  Of course my mind goes off the deep end.  But I’m sure the humidity and weather have absolutely nothing to do with that (sarcasm).

One of my major issues in life is that I worry about nothing too much. While I was in Chemo I have to say, I was so laid back and didn’t worry about stuff.  Of course I was so drugged up I don’t really remember much. I need to stop freaking out about every little thing. I can’t sit here and say everything will be fine with a clear conscience, but I can say I need to not worry about things I can’t control and live life every day.  I tend to get caught up in the cancer ruling my life.  Even post cancer it’s like a cloud that hangs over your head and you are just waiting. Well, I need to stop doing that.  It’s not doing me or anyone around me any good.

The other thing I really really really need to pay attention to is what I eat. Besides the fact that my taste buds totally changed so did the way certain foods react with my body. Look…I’ve been eating french fries for a good 45 years now….and the other day I snubbed my nose up at them and chose a salad as a side.  This is a huge change that I don’t know how the heck to take it!  I mean…what the hell! FRENCH FRIES!!!  And onion straws.  I love onion straws.  No, no I don’t like them any more.  It’s like all of a sudden…I can’t stomach anything that was fried. (and they just put in a Panda Express in town…..I won’t even attempt it)

I suppose this is all a good thing.  I’ve cut down on bread since my body seems to feel inflamed after I eat it. And wine.  OH WINE. I don’t feel so hot after wine. That has to be one of the hardest things to accept in this new way of life. <sigh> Okay, so lets take count….no bread, no alcohol, no sugar, no fried anything, no potatoes. OH did I mention the smell of meat makes me ill.  Especially red meat.  I can take chicken if it’s cooked a certain way…but any more I’m okay just skipping the meat.

Well I have fought this eating thing for a few weeks now just to make sure it wasn’t a fluke. And it truly seems that if it’s not a vegetable or a fruit I get sick after eating it. Fine whatever.  But at least I’m alive to bitch about this stuff.

Physical Therapy Begins!

Sep1

It’s so nice to move onto something…anything at this point! After 9 weeks of sitting doing nothing I am so motivated for this!  They gave me some exercises to do and did some massage.  Felt pretty darned good.  But she was explaining how because of the pectoral muscles that were cut and the effect that has on my posture…not to mention the hunching over to “hide” my absent chest.  Then all that affects the back muscles.  There is more to do than just range of motion to get my arm over my head.  I have those exercises but I also have exercises to help my posture. So I’ll go twice a week until I can get my arm over my head.  I’m hoping it won’t take too long.

Then I got home.  I was wondering why she kept asking me if she was pressing so hard.  I was like NO…well I have no feeling in my chest still so… But yeah, I was cooking dinner and all of a sudden my back started hurting A LOT!

We are only doing exercises on my left side since we are still dealing with the seroma on my right.

But I will do my exercises religiously at least once a day.  I want to level up!!!!

NED!!!!!

Aug31

After reading several medical papers and treatment guidelines, I finally figured out the correct question to ask and how to ask it.  I may have more useless knowledge in my head that I hope to never use again.

So this leads me to the exciting news that I am in NED!  No Evidence of Disease!!  So with advance stage cancer they never say you are in remission, they never say you are cancer free.  At least this is the case with my medical oncology team.  Because it is not known 100%.

So in advanced breast cancer we did chemo first to shrink and kill as many cancer cells as we could so they can more easily remove it.  Then we go to surgery where they remove the cancer.  My margins were clear which means that there is a pretty good chance there is no cancer left. We then do Physical Therapy so I can get movement in my arms back so I can put my arm over my head to do Radiation.  So at this point…why the hell are we doing radiation?  Well because there could be microscopic cancer cells that are undetectable through any type of scan. So they take the information from the pathology report and based on that and your stage of cancer (in my case Stage IIIB) they do radiation  therapy.  So after this there should be no trace.  But again…with advance cancer these buggers are aggressive and like to move…undetected if they can get away with it.  Now because I am ER/PR and HER2 Positive I’m on hormone therapy. And what this does is keeps it so if there are any microscopic undetectable cancer cells floating around it will starve them.  My cancer fed off of hormones.  So no hormones…no food…they can’t survive.  So I will be on the hormone therapy for 5 years. This should be enough time to starve off any that could have made it through all that other stuff.  After 5 years they reassess the hormone thing to see if they are going to keep me on it or let me go.  It is possible that if I were to stop the hormone therapy the cancer would come back. With Breast cancer it could come back in the lymph nodes, or chest wall (I don’t have breasts for them to breed there so…) But it could also move to other parts of the body…bone, liver etc.  If it does move to another part of the body years down the line it would still be considered breast cancer and they would treat it as such.  They do not do any type of MRI/CT/PET scans as they would not be able to pick up any microscopic traces.  So this is why they just say you have “NED”

But that’s not to say that down the line I could get another type of cancer…No telling…but Breast cancer doesn’t cause other cancers.

This is all what I’ve been told today.

Battle And The Amazon Warrior

Aug21

If you do not want to see what a double mastectomy scar looks like stop now!

People do not like to see the reality of breast cancer. Everyone sees happy pictures on Facebook and how everything is going right in the world.  While that happy face is on, what lies beneath is sadness and anxiety and very mixed emotions about one’s sexuality and overall appearance.  What lies beneath is the secret that keeps some cancer patients from feeling feminine or desirable.  People automatically think you will just get reconstruction and the world will be better.  You will have those perfect perky breasts before you know it and no one will be the wiser.  But for some of us we can not have Amazzone_ferita_-_Musei_Capitolinireconstructive surgery for months or years after our procedures.  We can not wear prosthesis right away.  We have to live with and face the raw reality every single day.  And to much of people’s surprise there are even some women who choose to never have the reconstructive surgery.  For myself I can not tell if I will feel differently in the future, but for what I went through with this surgery, I feel no real need right now to go under and have surgery to help boost my ego and make people around me more comfortable.  I am getting to the point where I am starting to feel comfortable in my own skin, battle wounds and all.  This is how I feel today. There is no telling my feelings a year or two from now.  But I have learned to accept myself as I am right now and not worry too much of the future and what others may say or feel.

With that I’m posting a picture of the battle wounds.  If you do not wish to see them then don’t look.  I am not embarrassed by them. I am empowered by them. The Greek Mythology of Amazons states that they were a tribe of female warriors that mostly fought with a bow and arrow.  When girls became of age to fight, they would remove their right breast to not impede their archery skill.  (Yes I will be taking up archery as soon as I’m healed)  So the Real Wonder Woman only had one breast!

I don’t look at this as a weakness…I look at it as a strength all 24 scars large and small I have accumulated from this. NOW I am proud to call my self a warrior!!

 

 

20160821_091050
The Chest of a Warrior