Tag Archive | breast cancer

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!!

 

 

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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

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.

Tigger!!!!

Jul29

I go into the Surgeon to get drained again today.  Hoping there isn’t as much fluid build up so I can start physical therapy and radiation and get this show on the road!.  It’s been a little over a month since surgery.  This by far I think has been the hardest part for me.  Chemo was physical with some emotion but surgery has been devastating emotional and extreme physical.  Before surgery I really didn’t think I would have that much of an issue with losing both breasts.  I mean to an extent I still don’t at times but it’s been a lot harder than I thought it would be.  I took sponge baths for the first 3 weeks so I didn’t have to really face 18 inches of scars across my chest and 20 minor scars around my ribs. I think taking a shower for the first time after all this was one of the most etiggeremotional and vulnerable situations I’ve ever had to face.  It gets easier and easier with each day but I’m still pretty devastated.  Hard to say if this is something that I will get used to and embrace over time.  Pete and I have talked about getting a nice big tattoo across my chest.  I’m seriously considering it.

Hair is starting to come in.  It’s to the point I actually feel like the wig has too much hair. I forgot how much I used to wear my hair up out of the way…especially in the summer.  But honestly these days my hair has now become the least of my concerns.

So obviously everywhere around the scars are still numb.  My upper arms still feel like they are being bound and I have no range of motion to do anything.  The pain is more tolerable now than what it was originally, but it is still there and can get pretty annoying at times.  I still have some neuropathy in my hands and feet (side effect from chemo) as well as some swelling.  The neuropathy has gotten a little worse since surgery, but that could be from some of the swelling.  At this point what’s going to be will be and I have to learn to deal with however this all turns out.

 

Tigger Song