Archive | August 2016

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.

Half a level up!

Aug31

Dr. Evil visit yesterday. I think someone said something to him regarding the appointment I had with the other doc 2 weeks ago and why it’s taken so long, or he’s about as over all this as I am, because he couldn’t get out of my appointment fast enough….and the demon nurse wasn’t in the room this time. See…I’m finally making friends…

There was 7ccs of fluid on my right side.  Okay fine, whatever. It’s the not important side. But because of it I still have to go back next week and who knows how long until that is resolved.   Whatever.  The good news is the left side…the all important side was cleared for PT.  So I get the referral to start PT, go down to Radiology to let them know what the deal is and exactly when I can call them to get that ball rolling.  Then they sent me down to the PT office where by some wonderful stroke of luck they had an opening on Thursday of this week. Hopefully this will go by pretty quickly.

As soon as I can raise my left arm over my head I can start radiation.  So hopefully that won’t take too long. I’m just thrilled with some sort of progress.  Sitting doing nothing for 9 weeks is nothing short of a slow torture.

But I have a bazillion questions to ask before we get into all this radiation stuff. I’m starting to get to that point where I send messages over to my oncologist weekly about stuff. I guess in the beginning because I saw everyone on pretty much a weekly basis it was different. And even though I see Dr. Evil every week he never answers any questions….he just talks in circles acting like what he’s saying means anything to us.

So I now feel like I can get moving on some other things…or at least start planning on moving on some other things.  I have been walking and doing lower body exercises. I still don’t have my full energy back yet.  So trying to balance the pushing it and taking it easy.

I do want to make an appointment with the nutritionist since the last time I met with them was when I first started Chemo.

How to save your heart

Aug23

I tend to have this habit of always looking at the good in all people. Even people who may not, on the surface, seem like good people…somewhere in there there is always some compassion and good.  I was brought up this way by my grandmother. Even people who have done awful things in the past I have moved on to forgive them. For I don’t want to be bogged down with their negativity and unhappiness.  Over the last year this has kind of th (2)been something I’ve worked on. Letting go. Not letting the actions or words of others affect you. People can only hurt you if you let them. With this I have been leading a very tranquil stress free life.  Every day I am grateful and happy for those around me and for the things that surround me.  I am not a religious person in the aspect that I pray to a specific God.  I do not believe in organized religion, I find it unnecessary for me. I think for some people it is a wonderful thing that helps them.  I am of a more spiritual type of person. I look within myself and nature to find my strength and understanding to get me through and find answers. This works for me.  I spent my entire child hood going to a Catholic Church, I was baptized Episcopal. In the military I attended the Episcopal church to get back to my roots. So I have tried this and it is not something that works for me.

So being the very content happy and accepting of life as I know it, I thought I would reach out to someone that there was once a rough patch with.  I quickly found that not everyone is as forgiving and accepting as I am. I have to say I have never met someone with so much sadness and anger in their hearts over something that happened so many years ago. At first I was very upset. I lashed out at those around me that did not deserve it. The entire situation threw me off balance…I had lost my tranquil being. After talking to my rock in life, he explained to me that some people are just unhappy. They have not found a way to let go and enjoy life.  For some people everything has to be a competition, everything has to be an argument. That is not normal and it’s very dysfunctional.

I think I get so easily sucked back into this because for the most part I was brought up that everything was a fight. There always had to be a winner.  Someone was always right and someone was always wrong. There was always a struggle of power within the family.  It took me a very long time to realize that this was so damaging and so not the way it should be. The last 20 years I learned that husbands and wives should work together not compete against one another. That if there is a disagreement to discuss and come to a mutual resolution that both parties can accept. I have tried to raise my own son this way and I surly hope he understands

Yesterday my past who has not learned this got the better of me. It bothered me a lot last night. I upset some of the most treasured people in my life over it. I will take this as a learning experience that I have to be stronger with some people and can’t assume just because I have changed to see they have changed to see.  I can not be angry but I will be more cautious moving forward.

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!!

 

 

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The Chest of a Warrior

 

Patience

Aug19

Evidently this part of this awesome little journey is patience.  Because the whole selling of the house by myself for 3 months wasn’t quite enough.  Okay, so patience on a different level. Or maybe the Universe though I forgot and I’m getting a refresher. OR the Universe is letting me know that I’m not in control of this.  Fine whatever.  The whole reason I went in today was because the Dr. wasn’t going to be here this week.  I specifically asked if there was little to no fluid could the other Dr. make the call.  I was told yes. This is the ONLY reason we scheduled with another dr (the one who put in my port). We wanted to keep everything on schedule.  So I go in, she didn’t want to drain anything because there wasn’t enough to drain. SHE would have had me start PT like 3 weeks ago.  BUT we have to wait for my Dr. to come back which won’t be until the 30th. She did try to drain out of one side and got some fluid. But the side where the tumor was she couldn’t get anything. And again I almost passed out because yes I may not have any feeling on the surface of my skin but you go far enough in and it hurts like a bitch. Seriously.  So I have to sit and wait until the 30th to see if I can finally start PT.  Whatever.  I ask if there are any exercises I can do that don’t affect the area we are being concerned about. I get told no. I only ask because I’m having a lot of back problems now because of all this. The nurse then goes. “Did you see a chiropractor?” I just deadpan looked at her face and said “Really?” “I can’t do any type of exercises with my upper body, can’t lay on my side and stomach and you somehow think getting adjusted by a chiropractor isn’t going to upset the balance of the universe.” I was like whatever. The other nurse said we will keep this appointment but if something comes open where they can squeeze me in before then we will. At least he is trying.  Bitch is lucky she wasn’t sitting closer to me I would have kicked her.  We leave and I’m all upset.  I threw my appt sheet away.  I’m so over it.

I totally had my hissy fit for about 30 minutes.  I’m pretty much over it now. I mean okay, it is what it is. We are being careful and don’t want to create any problems down the road. I get that. Eventually I’ll start PT and it won’t take long for me to get my range of motion back so I can start Radiation. The whole thing is I want to get radiation in before it starts to snow since I have to drive in every single day. That’s the real reason I’m pushing to get this done. I feel like I have a time limit. I don’t.  The fact is I’m just kind of over this whole situation and would like to move on…that’s even more why I want this to start now.  I will go down the way it goes down.  I’ll go though treatments when it’s time for me to do so.  It will end when it’s supposed to. I just need to relax, chill out and accept that it is the way it is. “you don’t have to like the rules, but you have to accept them”  FINE!

So I’m lining up the books I can read over the next week or two. That should keep me distracted.  What’s another couple weeks.  Let’s hope my body can start absorbing some fluid!!

A little Closer

Aug12

I wouldn’t call my trip to the surgeon’s office today a complete setback or failure.  The one side had maybe 2cc (16cc the previous week) and the other side (the important side) was down to 13cc (20cc the previous week).  While it was not exactly what I was hoping for (0’s) it’s way better than it was.  A reduction in fluid is way better than the same or more!  I will stay down again this week and try not to do anything stupid. This will be quite the challenge as I have yet to go 2 whole weeks with out stupidity. I mean I barely got by 1 week!  But I can do this! Me, the couch and the Olympics.  Should keep me out of trouble!  I think I’m going to read a book next week.  That will keep me down and not all over the place for sure.

Being down all these weeks is starting to take it’s toll on me. I really need to find something constructive to do while I sit here not moving my arms.  Why can’t I move my arms you ask? Well. The open pocket that is collecting fluid needs to bind so there is no more pocket. The only way for that to bind is for me to not move it around. Obviously this pocket is on my chest under my armpit.  So I have to figure some projects to do.  Watching TV for this many hours a day really doesn’t work for me.  I mean there are days I don’t turn the TV on at all. We’ll besides the book I’ll have to think of something else. Wonder what language I can try to learn…Not a whole lot of diversity up here in Montana to test it out…Then there’s that genealogy thing. And I can start on some projects for the Holiday season.  I mean that’s going to be here before you know it!

One thing I have to do is stay off Facebook more.  My lord people. Everyone is in hypersensitive mode about air. Politics, we get it your candidate is better than someone else’s candidate…and this is why…One side tearing the other apart while the other side defends blindly.  Well have at that one.  Then of course if things don’t get reported quick enough everyone is all up in arms that one side or the other is the reason…they are rebelling or getting back at some group for some reason. Then there is the media who seem to have the distinct job of just stirring the pot and creating nothing but drama. Doesn’t matter if it’s reported correctly…people will believe and react! RANT! RANT! RANT!  Nothing can be said without someone looking for a reason to place blame to someone.  I don’t have time for that shit. Are some of these issues important to me? Of course they are. But I’m going to see what I can do about it vs. bitching and moaning and pointing fingers. EVERYONE SUCKS!!

 

Ho Hum…

Aug8

I totally forgot to update on the last Friday’s aspiration appointment.  I was supposed to go to the Radiology Oncologist first so we could get everything set up so I could start radiation.  Well because I can’t raise my arms over my head yet, it put that appointment on hold for a bit.  So they decided they were going to send me to PT and then reschedule the RO (Radiology Oncology) appt for 2 weeks. Well the RO Dr called up to the Surgeon (I was supposed to see him that afternoon) and they talked. Next thing you know I’m in the Surgeons office and he aspirated again 20cc/15cc. No go on moving forward. I go down to RO to cancel my appointment.  Now I’m on hold until the aspiration numbers are at 0cc’s then I can start PT and move forward.  So while I wait until Friday to see how much longer it will be to move forward with the world….Let me amuse you with some photographs. I’ve been spending the last few days experimenting with what affects seromas.  I have been trying everything from compression/no compression/sitting/laying down/foods. Well it’s been interesting. And we’ll see on Friday if anything has had an impact. But the food thing…. After all these months I’m finally to the stage where I can start focusing on my diet. Through chemo there were certain things that my body just didn’t like.  I stuck to the very bland foods that I knew wouldn’t make me sick.  Since surgery I’ve been venturing out a bit to see if I can eat certain things again.  What I have found is my taste buds have changed.  There are also certain foods I used to be able to eat that I can’t eat so much now.  I don’t know if this is temporary but it has pushed me to go for the alkaline way of life.  We will see how this pans out.  Breads, potatoes, starches make things swell and make me very uncomfortable.  Certain spices upset my stomach.  And of course now we are back to the no dairy because just like before my body does not care for it very much.  I have to say that was the one thing about chemo I enjoyed….I could eat ice cream with no side effects. I think it was a good trade off!

This alkaline way of eating isn’t really far off from what I’ve been doing.  Just basically need to cut out some of these starches and cut down on the meat and add more vegetables. I had already given up anything from a box and cans are a no-no! Since this whole cancer thing started I’ll tell ya, grocery shopping takes less time.  I shop the perimeter of the store and then of course the paper/cleaning isle.  So that goes super fast. And we are actually saving money!

Starting to get used to the new body. I really think I’m going to be okay with it.  I mean once I’m cleared to start exercising its’ going to be so much easier!  I’ll do the prosthetics for going out and when I want to.  But I can just take them off when I get home!  That will be awesome.  The other thing I’m still looking into is the chest tattoo to cover my 18 inch scar.  Right now I’m going for some sort of vine/flower/butterfly or hummingbird ordeal.  That could change but I’m still looking at stuff. (I have some time….)

 

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The Minion Shirt at the beginning of Chemo

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The Minion Shirt after surgery.  At least it’s easier to read….

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Hair growth 2 months after last Chemo treatment

WEDDINGS!!!!!!!

Aug4

My son does have a little bit of romance in his bones.  Recently he and his girlfriend went to Europe on vacation. First my son has been wanting to go to Germany forever. And to see the Neuschwanstein Castle was like the ultimate.  They went to visit a friend in Amsterdam, then went to Berlin, Munich, and Hamburg. (Oh and the flew in and out of Stockholm).  I haven’t seen all the pictures yet, but they are working on them!  In their defense they have only been back from vacation for like 2 days.

And let me say how proud I am of myself for keeping this a secret as long as I did! I mean from the time he told me he was going to propose…to buying the ring…I said nothing!  See…I can keep a secret!  (MONTHS!!!!!!)

So they rode bikes up to the castle and he proposed to her there…right at Neuschwanstein Castle.  How freakin romantic is that!  I don’t know all the details yet.  I’m just so stinking excited about the whole thing.  I mean ever since he was little I would drill things into his head.  And when it came to it, he actually listened to me.  I think that’s what gets me more than anything with this.  A little more validation that he did listen to all my talking over the years.  I’m so glad he has done everything right up to this point. Makes a mother proud.

The only thing I ever wanted for my son was for him to be able to be a productive member of society and to respect people…especially the person he was going to choose to spend the rest of his life with. It makes me happy that he respects her. It makes all the horrible things that happened in the past not so horrible.  Maybe he had to go through all that to become the man he is today.  He is strong, caring, sensitive and will make a good husband. He better or I’ll clock him!

So now to pass the torch on to his soon to be wife. I can still worry about him and miss him…and I will.  But knowing that he has someone who loves him and will take care of him and respect him makes it a little easier for me.  I want nothing but love and happiness for them both.  I think they are really good together.  They seem to bring out the best in eachother.  And I’m very happy to be gaining a daughter.

Impatience Sets in

Aug2

I really hate seromas!  There was less build up on the left sie (25cc) and just a little more on the right (16 cc).  So I so I go back on Friday and get drained again.  Depending how much fluid build up is there they may put the tubes back in. And they would remain until there is no fluid at all.  Can’t start PT until there is no more fluid.  The thing with this is there is nothing I can do.  So I sit here trying not to do anything too stupid and move suddenly so I don’t pull something or irritate it more.  Wouldn’t be so bad if I didn’t have all the tightness and pain.  And at times it’s totally crazy to be hot and cold at the same time.  I mean how the heck does that even happen!  (rhetorical question…I’m too familiar with why it happens)

I also go in Friday to meet with the Radiology oncologist so we can go over what’s going to happen.  There are a few people left in the hospital who haven’t seen my chest yet so why not.  I just can’t wait to be able to start exercising and moving on.  I know in the overall scheme of things it hasn’t been that long.  I mean to get to this point after 6 months is actually pretty good.