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PT and the Lymphatic System

Had Physical Therapy today. Making good progress.  I’m almost there! But I had asked the burning question: “What ARE my odds of actually getting lymphedema.” This is something I’ve been kind of scared of since before surgery. According to my physical therapist she didn’t want to say my chances were good or bad. It’s all dependent on making sure I keep my left arm from getting injured or not keeping my skin healthy. She explained to me that we typically have more lymph nodes than we need.  Because I had so many removed I may have just enough or less than I need. This makes the others work harder and sometimes lymph nodes that never had to do anything now had to work for a living. The way it works is if I have a hang nail or other injury on my left arm or hand the white blood cells attack to make things better first. Then after they die off the residual left over from the injury is then circulated through the lymph system to clean out. Because I have had so many lymph nodes removed, it is important to not put extra strain on them.  If there is too much stress it backs up the lymph system and causes it to back up.  This causes the swelling and what is called lymphedema.

I asked about flying and if that is going to be an issue.  She told me that in the past it was a concern because things were not quite understood.  People would get the compression sleeve for the flight to prevent any issues but in reality they were finding they were causing the problems. So she told me if I was going to fly to just make sure to not eat anything overly salty and make sure I keep moving my arm to keep the flow going.

I never really thought about the skin factor.  She said it was important to make sure that I keep my skin from getting overly dry.  This can cause the lymph system to work harder. Who knew!  I also asked what I can do to help the old lymphatic system out. And she said the obvious and previously stated injury free and skin care, but also to massage and rub the arm and chest towards the heart. This helps keep everything moving.

And that is yet one more thing I learned today….whoo hoo!

Pooka Glossary

I love this!!!  A must read for all the warriors.  Thank you Iridacea for this!  AWESOMENESS!I have been realizing that some things that are obvious to my household are just not part of the lexicon of others. Here is a little explanation- I will add more per your request or when I notice something questionable here on Pooka Ride.

For more go to:  Pooka Glossary

Knockers!!!

Today I had support group.  It was a really good conversation.  Talked about after treatment is over…then what?  Most of the group agreed that we have become better people having gone though this. A lot of the conversation surrounded the “new normal.” I know I have been thinking a lot about how to more on and what happens afterwards. How do you pick up and start over. How do you find what your new normal is. How to deal with all the changes. In the beginning it’s overwhelming and hard to accept that your life will never be quite the same again. I know I went through a period of denial. I was going to be different than everyone else and I was going to just pick up where I left off and that was that.  Even through Chemo I figured okay so I lost my hair, it will grow back and then everything will be back to the way it was. Then I had surgery and it started to hit me.  Still not totally convinced. But somewhere along the line of sitting around for 9 weeks and going into the Surgeons office every week it finally hit me. I started thinking about the “No Evidence of Disease” and having to go to the drs every few months at first and then every year.  With that the cloud that looms over your head and wonder if you are going to have to go back into treatment.  I haven’t finished treatment yet, so things in my mind may change still.  But I’m starting to think about the future.  I suppose that is good considering in the beginning I didn’t think I had one at all.

So in looking at the future I went down to the navigators office and got these beauties…

Knitted knitted-knockersKnockers.  Now I have posted the website for them on Facebook in the past. I wasn’t real sure about them I mean…come on…anything knitted is like grandma’s toilet paper roll covers.  But they work! It was very strange having any type of breast there. These are a C cup and they feel huge. So I can’t imagine what my DD/E’s were! Lord!  So you just put these in a bra and shape them in. You can’t tell the difference by looking at them at all.  I didn’t think I would be that excited about them. But I had my support camisole on so just put them in real quick to get an idea.  I mean I automatically stood up straighter. (As I sat in the Navigators office fondling my new boobs)  http://www.knittedknockers.org  I have to say it’s the first time I’ve felt “normal” in months.  I may get a few pairs in different sizes depending on my mood.

I wish I could knit better or crochet better.  Maybe I’ll start practicing and start making them. I’ll at least give it a try. (the pattern is on the knitted knockers website)

 

 

 

Finding Inspiration

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

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!

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!!!!!

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!

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.

Battle And The Amazon Warrior

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