Impatience Sets in

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!!!!

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

 

The word for today is: Seroma

Had a lovely day at the hospital yesterday. Met with my Medical Oncologist to see how things are and what’s next on the agenda. We made an appointment with my Radiology Oncologist to see how that is going to play out and how long that treatment will be.  Then I went over to my Surgeon and he drained a bunch of fluid out of me.  Which means no physical therapy yet.  I have to lay low for another week to make sure the fluid has gone down.  I meet with him again next week to see where we are with that.  If the fluid doesn’t slow down and stop he’s threatening to put the tubes back in.  I told him this was not an option….I’m not doing the tubes again!!! So if the world goes right, they will drain out minimal fluid next week and then sign me up for Physical Therapy so I can get my range of motion back.  Then I can start Radiation and do that for a few weeks.  Then once radiation is complete do the immunotherapy.  Then we can see where I am with all this.  Still a lot of things to go through but should be pretty much on the down slope of this craziness.

So I’m going to try really hard to be good this week and not do anything crazy like clean and laundry and anything else that uses my upper chest muscles and upper arms. I did get told I can walk around, but I can’t go swinging my arms around like crazy. Fine. I think this part is driving me the most crazy. It’s like you finally feel good physically for the most part and you just want to get up and do everything like normal. (isn’t that cute that I think of the word normal?)

Fine. I will continue to chill out and do this healing thing for another week. But after that…it’s on.  Seriously though, the hardest part is trying to get comfortable at night without using your arms to move your body.  The recliner and my back are no getting along anymore so I’ve moved into the guest room with a fortress of pillows (and the dog). I’m fine once I get all set up, but until then it’s about hell.  Cleo has been very good about just sleeping  next to me to keep an eye on me. Okay really she just likes to be able to sleep on the bed with me.

Also went to support group yesterday.  I hadn’t been the last few times because of surgery, so it was nice to see everyone and catch up a bit. I wasn’t going to go because I had a drs appt at the same time, but did make the last 10 minutes of the session and then we all sat around and talked for like 45 minutes.  They are a pretty good group.

The hair is growing back finally. On my head I can actually get enough to pull it a bit. Eyebrows are slowly coming back as well as eyelashes and hair on my arms! And I think I may actually have to shave my legs soon! I’m not sure I’m too excited about that one…it was really nice not shaving my legs! Everything is at fuzzy birds nest stage.  Shouldn’t be long before I’m rockin the pixie look.

I’m starting to kind of get used to my scars. Not sure if that’s a good thing or a bad thing. Right now putting on certain shirts is a little hard.  Trying to keep everything baggy at this point. If it was cooler I could at least wear a scarf but not yet. By hard I mean not just hard to get into something that slips over the head but emotionally to see.  I mean you go all this time with breasts and then you don’t have them. Not that I particularly liked them anyway, but it’s just the principle of the whole thing I guess.  I do think I’m going to be okay eventually just being able to take them off at the end of the day.  And it is going to make exercising so much easier.

I haven’t gotten the official pathology report back (which I so should have seen this by now!) but I guessing it was about 5 lbs in breast/tumor tissue.  If I had to guess.  But I’m down 12 lbs in all since surgery.  Once I’m cleared to exercise I have a whole new plan. The body looks much different without the breasts in the way….so totally different perspective.

 

 

No more drain Tubes!

Today I got my drain tubes removed.  I have been stressing over this for some time. I talked to many people, read many reports, asked lots of questions.  I was prepared for it.  So they remove the stitches, tell me to take a deep breath and when I breathe out they pull 12 inches of tube out of me. The first side was a bit of a shock and was pretty uncomfortable. Tinge of pain. The other side….they pulled, my blood pressure dropped and I went white. It hurt like a bitch and was the most awful feeling ever.  So out of all the things I’ve been though, drain tubes about take me out. Drain tubes suck ass! May I never have to deal with that again.

Overall the incision is healing nicely.  Everything is very sore, bruised and just awful looking. I have a lot of constriction in my upper arms and not a whole lot of feeling between my shoulders and ribs. I go back next week. If there is no fluid build up then I start physical therapy the following week. I can then start working on my range of motion and getting back to the new normal. I’m hoping I can avoid the drama of lymphedema. All I can do is keep my fingers crossed and not do anything too stupid. I think that’s my next big hurdle. But for the most part I should be on the downslope of the hill.

So for now I”m going to just chill out for another week and heal some more. I’m one more step closer to being done with all this. There are quite a lot of steps!  Next week I also go in to see my medical oncologist and do some blood work and see what the next step is on that end (more anti-hormone therapy and immunotherapy maybe) Also will see when I’ll probably start radiation.  I’ll also see when I get fitted for my prosthesis. That will pretty exciting.

1 week since surgery

I have to say this has been the worst surgery I’ve ever had. Took off the dressings yesterday and I was not really prepared for that. I researched and looked at pictures and the whole nine yards to prepare myself for that and its completely different when it’s on your body. So that was a pretty traumatic experience so far. Still in kind of a fog from the pain meds. Pretty much down to 1 every 4 hours. Today I’m going to try to stretch it a little more. Most of the pain is in my left armpit where they took out lymph nodes.  Then the left chest area where they took out the tumor.  My right side isn’t too bad.  I wouldn’t describe my right side as painful…just an annoyance.  Still not eating the full range of foods yet.  Sticking with the basics…turkey sandwich, peanut butter and jelly, crackers, jello and chicken broth.  Not really into food yet.

Not really into being social right now. I’m pretty content sitting here watching shows and sleeping. Pretty much staying off of Facebook because I don’t really care to read all the drama and hate in the world right now. This surgery has really tested my positive outlook on everything. This has been the hardest most emotional part of this fun little journey so far.  Emotionally I’m completely numb. I don’t know if it’s the meds or the fact that I just can’t deal with this right now.  Part of me is like….”This is no big deal….people go through this all the time…so what.”  The other part of me is completely devastated. I’m sure this will also be part of this whole healing thing. I can see how this could change a person.  I like to think this isn’t going to completely change me but it already has.  Hope I regain my sense of humor, because that would totally suck.

So the positives from  the last week….

  1. I’ve watched season 4 of OTNB. Caught up on season 4 of Wenthworth. Watched season 1 of Mr. Robot. Halfway through season 2 of Gotham. Getting ready to watch Bloodline now….hopefully it’s decent.
  2. I’ve lost about 10 pounds since surgery.  But like 5 of it was breast/tumor so not as worrisome as it sounds.
  3. I made it through surgery and am here to talk and complain about it.
  4. The world goes on even if the kitchen isn’t cleaned
  5. Pete’s boss sent over a casserole.
  6. Pete’s staff and co-workers sent me a goodie bag filled with some stuff and a card.
  7. Erik and Ashley sent me some beautiful flowers
  8. Pete picked me some beautiful flowers from the property
  9. Cleo sleeps in the recliner next to me or is always close.  She’s been pretty good through this so far.
  10. I continue to have support from people even if they really have no clue what to say to me right now.

Surgery

Wednesday I went in for the bilateral mastectomy with lymph node dissection. I was pretty okay for the most part. After surgery they said I woke up in recovery but I don’t remember any of it.  I was taken into my room.  I don’t remember much of the first night…just bits and parts. Strange because I have never had that reaction before. I always wake up coherent in recovery.  Spent one night in the hospital and went home Thursday about noonish.

I have pretty much been in the recliner surrounded by pillows since Thursday. I have 4 drain tubes, 2 on each side. I kinda feel like Dr. Octavius with these tubes sticking out of my body. I still have the bandages over the scar but from what I can tell it doesn’t look too bad.  I do have some track marks on my right forearm from the IV…so that’s kinda nice.

I talked to the surgeon Friday evening and the pathology report had come back.  Since it was a lobular tumor it was several small tumors over a 10 cm area. The margins came back negative (clear) for the tumors and 5 out of 17 lymph nodes that were removed were positive.  In short what this means is that it’s highly unlikely that I have any cancer left in my body.  We will do another MRI to determine that it is all gone before I can start getting all excited.

I go get the drain tubes removed on the 12th. I then start physical therapy right after that. I’ll then do radiation to make sure nothing has been left behind. Then do immunotherapy and more (anti) hormone therapy to make sure it never comes back.

Pain wise the section they took the nodes out has been the most excruciating pain I’ve ever felt in my life. The actual mastectomy doesn’t hurt that bad. Everything is sore and numb.  What sucks is the itching and not being able to feel the scratching.

I’d like to say it’s all over but I’m about half way through treatment now.

T minus 40 hours

I’m sitting here trying to rationalize this whole surgery thing.  I’ve been racking my brain to find the positives.
1.  There is a good chance I won’t have to worry about breast cancer in the future.

2. They won’t get in the way when I do things

3. Running will be more comfortable

4. Don’t have to wear a bra.

5. No more mammograms

6.  Can wear more styles of clothes

7. One less body part to try to kill me

8. Jump start my weight loss program

9. Sports will be easier

10. If I really miss them I can always put fake ones on.

11. People will realize my eyes are green.

12. I hear you get smarter

I’ll try to think of more….

5 Days Out

My drain holders came today.  whoo hoo.  How exciting. (feel the sarcasm)  I’ve been reading a lot and watching videos of people who have gone though this.  I say people because men can get breast cancer too and go though this surgery.  I’m trying to prepare myself. Not sure if its helping or hurting at this point.  I’m very torn with my feelings right now. Part of me is in total panic mode and starting to mourn the loss of the girls.  The other part of me is going to be thrilled to get rid of the lethal bitches.  So needless to say emotionally I go from one extreme to the other.

20160624_123829.jpg

The other thing is I HATE surgery, not a fan of pain and hospitals.  And I honestly really don’t want to do this at all.  But Idon’t really have a choice in the matter.  So I’ll have to suck it up and deal with it.  My last hospital stay was not very favorable.  But it’s a different state and different surgery so maybe it will be a positive experience.

I’m trying to get myself all set up for this.  I’ve downloaded some shows I’ve wanted to watch.  A few books I’ve wanted to read once I get through all my shows.  Today starts the NO LIST.  So no medications, pain killers, vitamins etc. before the big day.   We already pretty much took Cruella down…now it’s time to remove her from the battle field.  I think that’s the part I’m excited about.  Just want to move on to the next phase…..physical therapy!  (then radiation in case she decided to leave something behind…..wench)

But I am going to take a picture of the noggin each month to see the hair growth progres
sion. That will be fun.

The countdown begins

I’m now one week out before surgery. I have my button down attire and my drain packs on there way. I have figured out my show line up of Netflix and downloaded shows to keep me entertained.  I have the book ready once I’m over the show catch up.  I’ve got about 2 weeks of hell with the drain tubes that I have to keep myself occupied.  Now just trying to figure out the logistics of how I’m going to do certain things with little to no arm movement.  I’m sure I’ll figure it out.

One thing I have found interesting though this process so far is that people are interesting.  Most people in the beginning are all over you for information and how they can help.  They are very supportive.  Others disappear and won’t talk to you any more.  The ones that are supportive and “If you need anything just let me know” start to die off after a few weeks. This cancer thing is a long road and not everyone has the stamina to keep that up for that long.  Then you get over one hurdle and stop Chemo another group assumes you are cured and it’s over.  Yay you beat cancer and now you can go on being normal. (Nope it’s still there just had to control it before they took it out…advanced stage cancer is much different than early stage cancer) Then out of the people that are still hanging in there with you….Surgery.  Yay you get a boob job. Um no. I’m not getting a boob job.  Everyone seems to think that after a mastectomy they put these perfect breasts into place right afterwards and you are instantly a Baywatch model.  I wish.  So what’s left are a very few people who just want to know how you are doing. They haven’t made any crazy gestures about helping.  They are there for moral support. They haven’t changed how they talk to me.  And I appreciate that. I have learned that my husband is one of the strongest most patient people I have ever known.  He listens to my rants, wipes away my tears, make me laugh through it all and gives me the strength I need to make it though another day.

(Sidenote:  DO NOT insist that you will help and keep saying it and then when it comes up I ask for something you disappear. I am not the type of person who ever asks for help because of this reason.  And this is why going forward I will never ask for help again. I don’t have time for the games and the let down.  People think they need to extend help and do so with no real intention on following through. It makes them feel good by saying it but the whole time dreading you may take them up on it….or they want to do something when it’s convenient for them not you.)

I have also noticed people are afraid of the bald head and “cancer look.”  They do not know how to approach you, and they certainly have no idea what to say to you.  I have noticed this with friends, family, and strangers.  Well I am probably less scary now than I was BC (before cancer).  What do you say to someone with cancer?  What do you not say?  How should you act?  Can you joke with them?  Although people with cancer have probably changed a little bit, for the most part they are pretty much the same person they were before the dreaded C appeared.  I can only speak for myself but the hardest thing is people not being sarcastic to me any more.  I still love to joke around and be sarcastic.

I have spent many days alone with my thoughts over the last few months. And it is starting to sink in that this is going to take a while.  Effects of chemo can last months to years after the last treatment. It’s going to be like 2 years to get all my hair back the way it was.  Surgery.  Ugh. I don’t even know what to think about that at this point.  Reconstruction or no reconstruction.  I have some time to think about it but it’s such a process.  So I may just have cancer chest for the rest of my life unless I want to go through the whole expander thing and surgeries and all the crap that goes along with that.  Barbie Boobs….(no nipples unless you want to get them tattooed on) and they are going to have Frankenstein scars across them so really….

Am I scared though this whole thing?  Yes and No.  Yes because from day 1 it’s the unknown.  You go from “OMG I’m going to die” to “I don’t think I can take much more of this.”  But No because I don’t have a choice.  I’m learning to live outside of my comfort zone on a whole lot of things.  You just get up, put on your battle face and  move forward. My main feeling thought this whole thing is still utter bullshit.

But for people who are afraid of people with cancer, ask them questions.  They will probably explain anything you want to know.  You get poked and prodded and felt up by so many different people that your inhibitions are pretty gone…so no question or topic is off limits..We really aren’t scary.

Surgery Scheduled!

Went in for blood work, go over MRI and schedule Surgery

Blood work is all good…MRI: Tumor and mass shrunk as well as the nodes. So Surgery is scheduled for June 29th.  I’m having a Bilateral Mastectomy with left Axillary Lymph Node Dissection. Which means they are removing both breasts and the lymph nodes from under my left arm.

I’ll be down for a few weeks.  After the drain tubes come out after a week or two I’ll start physical therapy.  Then radiation. The length of radiation will be determined by what is left over after surgery.  But radiation is typically every day for 5 weeks.  Then we do immunotherapy and up my anti-hormone therapy.  THEN hopefully my margins will be clear.

I was not a candidate for a lumpectomy due to the size of the tumor and the late stage cancer diagnosis. So mastectomy it is.  I’m doing both because although “you aren’t at risk for breast cancer” I don’t want to take my chances with the right side.  And I’m all about symmetry. You hear a lot of people who have reconstruction at the time of the mastectomy but I’m not a candidate for that because I’m having radiation afterwards.  I can have reconstruction at a later date if I choose.  But I’m going to go with the French Waif Model look for a bit.

So another step closer to getting rid of this stupid cancer thing.  It’s a long road….but at least I’ll be alive!

wp-1466099018421.jpg