Everyday is hard and medical updates.

Well friends this is hard.  Much harder then I ever thought it would be.  I thought when treatment ended the hard would be over.  

But it's not. 

 I was warned that survivors have a difficult time with maintaining there mental state after treatment but I thought I was above that.  Always thinking to myself how hard can it be in comparison with getting yourself through treatment. 

Keeping myself in a good spot mentally is a daily challenge, sometimes even a minute by minute challenge.   It becomes even harder when people are coming at you with drama or you trying to accept not everyone is where I am.  On most days I don't have the mental capabilities to deal with much outside of my own head.  I have been a cancer survivor for a month now and it has proven to be harder then dealing with the cancer in some respects.

While dealing with cancer everyone understands you aren't in a good place. They understand that you cant handle anyone laying extra burdens on you but then treatment ends and everyone, including myself, thinks you should just be you again.  Deal with the smaller stuff, the drama of life, others peoples issues.  I can barely deal with getting myself dressed daily, let alone take on everything that I feel is being thrown at me at right now.  I do get up everyday, I challenge myself and I do still choose JOY everyday but that doesn't mean I have the ability to  take on extra.  

Let me back up a little, because I realize I haven't even updated about how radiation ended up going. 

I successfully finished 28 rounds of radiation, but not without it's struggles.  The first 3 weeks were easy.  I was only fatigued from the oral chemotherapy I am still taking.  I was able to walk and enjoy myself.  We explored a little and even visited the beach during this time. 

Around the 4th week I started to develop a burn near my cooler bone and neck.  The nurse called it a hot spot.  It was where the skin folds  while holding up my arm. She said the heat basically stays inside of the pocket and although it is receiving the same dosage of radiation as the rest of my chest the skin can't handle the heat sitting in the pocket.  The Doctor continued to treat me during the 4th week in spite of the burn area but when I went back to Portland for my 5th week they sent me home early without treatment because of the burns.  

( I don't feel like the pictures really depict how bad the burns were and they definitely don't show how uncomfortable they were.  I had many people in the public ask me what happened and was I okay because much of the time it looked pretty bad.  The burn cream also made it look worse then it was and I wore the burn cream all the time.)

Apparently the burn can become infected and cause larger issues like hospitalization.  Some radiation oncologist will treat through the burn but my doctor is more conservative and was also worried about my high risk of infection due to being on the chemotherapy at the same time. So I was prescribed a burn cream and sent home for the rest of the week.  At the time I was devastated.  It meant more time in Portland and away from my family. 

 Although Portland wasn't awful it did cause some strain.  Trying to fit in everything in a two day time span when I was home, packing and re packing, making sure my family was taken care of and ready for the week while I was away.  The last thing I wanted was for treatment to go longer.  In the end it worked out though.  Blakelee graduated kindergarten that week they sent me home early and going home allowed me to be with her for her last day of school.  Which didn't make up for not taking her to her first day ( because I had testing all day) but it did make me feel like myself for a few minutes.

The 6th week of treatment I still had my burn and it didn't seem to be getting better.  We still drove to Portland in spite of feeling like maybe they wouldn't treat me again.

(My last week of Treatment crew)

  The nurse was hesitant but did agree to treat me Monday and allow the doctor To see it Tuesday.  Tuesday came and the Doctor was also hesitant but because we had a hotel room and I had 4 treatments left she agreed to allow me to finish treatment.  I just had to be really careful and clean the burn area well.  I did this.  Two showers a day lots of burn cream.  The burn became mildly worse and some burn areas shows up on the skin graph and other side of my chest near my collier bone.  It wasn't as bad as some others I know who have been through radiation and for this I was grateful but I have learned that my journey is my journey and to me this burn was difficult to deal with and during a time when I was almost tapped out physically it really seemed like a huge mountain to deal with.  

The other side effects I had during radiation was skin peeling on my hands and feet.  This is from the chemotherapy.   

This looks better then it does in person also.  As long as I keep lotion on my feet they look more like this.  Days I don't do lotion like I should they peel allot more.  

On top of the skin peeling on my feet at the end of each treatment (a two week time span)  my feet would feel like needles were jabbing through my feet every time I walked.  Luckily,  My oncologist asked me if I was taking any vitamins. Sure enough I was, because my plastic surgeon said it would help aid in the skin graph healing process.  Well it turns out that this was counter acting with the chemotherapy medication and in turn causing to much folic acid to build up causing the needle pain.  Once I figured this out and cut out the vitamin's my feet felt much better.       

 

I also developed staph.  Apparently it was just a mild form and antibiotics got rid of it.  I didn't even feel it.  My radiation oncologist found it and sent me to a dermatologist at OHSU.  In fear that it may be a skin cancer.  So glad it was just staph and easily treated.  I did learn some interesting information from this dermatologist that I think is important to share with all of you.  

When I first found the cancer spot in my breast it felt like a round ball and was really painful.  I have been looking for the right word to describe what I felt because it wasn't a "lump"  it was more of a ball.  This is because, as I have said before inflammatory Breast Cancer is a little different then other breast cancers and sits in the skin not the ducts.  The dermatologist gave me the "ball" word.  He said that if you are dealing with a cancer in the skin it will feel like a ball that sort of moves.  It's not a lump feeling.  Please just be aware of this when doings self exams or looking at any thing out of the normal on your body.  Men need to know this also.  If they feel something on them or there spouse that is either a lump or a ball that has not been there before PLEASE have it looked at!  Cancers are not always a lump and a ball doesn't mean benign.  

I finished my last week of radiation and felt like I wasn't sure what to do.  My last treatment I had the worst anxiety.  Unsure of what was to come.  I was done.  Done with treatment, besides my chemotherapy medication and a lupron(?)shot which deals with hormones and keeping them from spiking, I was finished.  I had made it.  9 months of my life just done.  I wasn't and am still not sure what to do with that.  You go from having a doctors appointment everyday to having one, maybe, every 3 weeks.  You deal with the emotions of surviving  but being so incredibly scared everyday. I'm trying to get back to life and  many days I am successful but it's always a challenge.   

When I was diagnosed and during my time in the hospital I really felt like my brain was so loud.  I couldn't take in much more stimulus. I thought that would be over once treatment ended and I was officially deemed cancer free but it hasn't.  My mind is still so loud.  Anything extra thrown at me is a lot to process and sometimes I can't even process's it.  I just have to leave it alone and come back to it.    

People are expecting me to be fine now.  To be who I use to be, but I am not who I use to be.  You can't come out of a storm unchanged.  Even if its just raining you still walk in wet, and needing to change your clothes.  I feel like I just went through a tsunami in my head and I need to do more then change.  I need to challenge myself everyday,  I need to figure out what my purpose in this life is. You can't make it through the storm and not feel that you were made for bigger things.  

Maybe I am meant to educated.......well I definitely know I was made to educate.......but maybe I was made to educate the world in a bigger way.  I don't know and  my goal now that I am through treatment is to figure this out.  

So if you see me crying..... don't worry.....I AM BEYOND HAPPY TO BE ALIVE,  I am also accepting where I am in life and that it's okay to be weak right now.......I am just crying because I have the ability to feel and feel deeper then I ever have.  

Journey Video

I am just learning this video editing stuff and really enjoy it but because I am new to it the video is not perfect.  Many of the pictures you have all seen before but I really wanted to put together something that really showed my journey through treatment.  I chose pictures that represented feeling, reality, and the joy my people brought to my life.  I want to do an update blog post but will get to that next week for now enjoy the video. 

JOY

"What if your joy during your circumstance is the thing that led them to Jesus"

-Danny Looney 

Mission Church Pastor 

This photo was taken 2 days after getting out of the hospital, early March.  Michelle came over and said "your getting dressed, I don't care what we do but you are getting dressed and leaving this house."   (for the few that may not know who Michelle is she is one of my best friends and she has been my rock since before diagnosis).  I did not want to get dressed.  I had bulky ace bandages all over my legs and my chest.  I couldn't shower.  I felt defeated, but when she showed up and made me get dressed my mood changed.  I was ready to choose joy.  To face the world as I was with no fear of judgment. 

Now don't get me wrong I haven't chosen joy easily through treatment some days it is down right the most difficult thing I can do in my day.  Some days I have to choose it more then once.

 Prior to hearing Danny's sermon a few weeks ago I didn't really know that I was choosing joy.  I thought I was just choosing what I needed to choose to get through this time of my life.  I mean in actuality, at diagnosis, I had 2 choices. 

1. Cry about it and move on with a smile on my face and love in my heart.

or

2. Cry about it, cry about it, and cry about it some more. Then sink into a whole of depression and sadness.  

Number 2 would have been much easier but I am just not sure it is in my nature.  

Recently I have felt that maybe my joy has been misleading to people.  Just because I try  my best to choose joy each day does not mean I feel well.  It does not mean I am not struggling.  It does not mean that I am not in pain. 

It DOES means that I am making a conscious effort to choose it.  It means that I am digging deep and finding the good in my day, it means that I am choosing to follow the holy spirit because he empowers "me with unstoppable joy no matter what I am facing!" (Danny Looney, Mission Church)

Lets be real, everyday I have the  choice to wake up and give my joy away.  To allow cancer and the treatment to win.  

When I choose joy it  doesn't mean I don't still have fear, confusion, or pain.  It means I am not going to hold onto the fear, confusion, and pain.  

The problem with choosing joy everyday is that it becomes misleading.  I absolutely do not want anyone to take this cancer lightly.  It is not a joke, it is not fun, and early detection is IMPORTANT. 

My Facebook shows that I am out having fun and loving on my friends and family and although this is true, I am.  What it doesn't show is how I am truly feeling on that day.  I am lucky enough to feel decent and to have pain that I can push through it doesn't mean I feel great it means I am choosing joy and my family.  

Some days it takes a lot of self talk to get out of bed.  Most days I really would rather not get dressed, not clean my house, not go on an adventure with my family.  Most days I honestly want to wallow in my own self pitty but what good would that do for me?  ABSOLUTELY NOTHING.  I would allow my fears to take over.  I would be giving my joy away because I want to hold onto all the fear and anger instead.  How healthy is this?  it sure wont get my through treatment or give my body the fuel it needs to keep going.  

Today I sit writing this blog with a burn on my chest that hurts when water touches it and itches all the time.  My skin graph feels like I am wearing a bra 2 sizes to small when in actuality I have nothing on. My throat feels like it is being scratched up every time I swallow, leaving me with limited food options. The skin on my fingers is peeling off and the bottom of my feet feel like needles from the chemo meds but in a few hours I will take the next dose and tomorrow morning I will wake up and get ready to burn my skin again with radiation.  This doesn't mean I have the right to disappear.  I have the right to get up and show up.  I have the right to choose joy!  

I went camping this weekend.  Was it comfortable.......nope.  Was it fun..........yes.  I washed my chest in Michelle's tent out of a bucket that we used for dishes (skin care is of utmost importance right now) and I had many uncomfortable bathroom moments in a makeshift toilette, or bucket, whichever you want to refer to it as.  Why did I do this?  because I chose joy.  I chose to get up and show up.  "my habits determine my fruits" -Danny Loony

A year ago my habits were camping.  I love camping, I love nature.  So why would I not do it now?  I could let the above issues stop me. I could complain that I can't do the things I use to be able to do or I can adapt, adjust and tackle whatever comes at me so I can choose what MY life looks like.  When life is so beyond out of your control you need to take control of what you can and SHOW UP!  Will you always be 100%........NOPE.  Will you always look your best.........NOPE.  but you will be creating your own story and hopefully allowing people to join you. 

Happiness is based on what happens to you.

Joy is based on what happened for you.  

I know that many of my friends are not Christ followers.  I wasn't either, until about 6 months ago.  This post isn't about making you one. What it is about is........

 Who do you want to be? 

What do you want people to see when they look at you?  

I hope that instead of seeing my joy and questioning how sick I really am that you can question my joy and say how do I get there? 

In case you are interested in hearing more about choosing about choosing joy.........

Radiation and go

Week 1.5 is about finished.  As of tomorrow I will be down 8 treatments and have 20 left.  Baby Steps, everyday is a victory.  

 So far, so good!

 I have not seen any change in my skin yet.

I am tired but this could be due to the chemo medication I am also on.  Actually  the Chemo medication has proven to be my current battle.  I take it for two weeks and then I have a week off of it.   This last cycle I developed an interesting rash on my hands and my feet began to burn. The hand rash is new but the  burning feet happened last cycle.  I was unable to walk one evening because it hurt so bad. This time the feet just burned when I walked but it was more mild.  I have figured out that if I  have shoes or slippers on they don't seem to bother me so much.    I have been off of the pills for 3 days and the rash on my hands is still there but the feet are not hurting.  So I may need to change my dosage or change the way I take it.  The radiation oncologist has her concerns about me being on both, radiation and chemo pills but believes it is a good idea we just need to monitor symptoms closely.   

So lets talk radiation some more......... 

When I get to the office each day I check in, walk to the back room area where there are dressing rooms.  I put on a fancy hospital gown and I sit in a pretty dull room and wait.  Once they are ready for me they come get me and then it takes about 30 minutes for the actual treatment. 

The machine circles around me one time taking pictures and then 2 more times to distribute the radiation.  Last week, for my first 3 treatments the plan took about 45-50 minutes.  It equaled about 20 breath holds and my arms up for the whole time.  I managed fine but it was exhausting. The breath holds seemed easy but holding my left arm up for 45 minutes was difficult.  It would really start to hurt.  Once the arm started hurting it became harder to breath.  I do lay on a bed but it is really thin and the way I have to hold my arms could be a challenge for anyone, but for me the muscles aren't thrilled about working yet so it became even more of a challenge. 

On Monday I had the same plan but after meeting with the doctor on Tuesday I was informed they had changed my plan a little.  I would be receiving the same dosage but it would hopefully be faster. So the last 3 days my treatments have lasted the 30 minutes and the breath holds have been lowered to about 10.  My arms are much happier and my lugs are grateful for the change.  

Today while I was laying there watching this big circle like thing go over me. I was thinking about how weird the concept really is.  It's beams hitting my skin yet I can't see them or feel them.  Inside the machine you can see this green light and little gears moving. I was trying to figure out what I thought it reminded me off.........I finally decided that it appeared to be a dragon.  It has a long  neck and the glass part that I can see from my perspective is the mouth it just breaths the fire onto  my chest. I know, kinda silly but it entertained me to envision this way for a few minutes.  

I think there is a resemblance, don't you?  haha  

All of these cancer treatments have proven to baffle a mind.  I mean besides the obvious...... it really, really stinks thought......I am literally paying people to kill my cells, burn my skin, and cut me up.  What a brain drain that is to truly think about.  I am just not sure I can actually process that thought or why it only just came to my mind while writing this post.  

Anyway moving on from that idea.........

Lets talk emotional state. 

It's doing alright.  Being away from my home and my family is seriously tough.  To all you families who have a spouse who works away from the family for moths on end.  I give you tons and tons of props.  This is no easy task.  I know my girls are in great hands.  They are being loved on at there schools and with family but OH MY, I MISS THEM SO MUCH!  I missed Mothers day planting at Blakelee's school today.  I had a fantastic stand in and although I am so thankful we have these people in our lives who can be a stand in I HATE missing out on it.  The whole things brings me down a bit but I am trying to stay strong and remember that this is all so that I can live a long life and see all the many things they will do as they grow.  

Financially....

I have been blessed to have so many offers of free places to stay while I undergo this part of my treatment but it turns out I get reimbursed for hotels through one of my insurance Companies.  So the last two weeks we have been staying in a hotel and next week we will do the same.  The following week we will get to experience the Ronald McDonald house downtown Portland.   

Things are definitely coming to a head financially but because of the donations made early on I am staying calm.  I had a plan when I started treatment of being able to work so much more of this school year then I actually have been able to.  I have used all of my FMLA leave but they have switched me to ADA leave which secures my job but doesn't allow me to keep my insurance with the help of the school district.  I am lucky enough to have a job where my employee picks up ALLOT of the premium but because of my leave from work  I no longer qualify for this and will have to pay COBRA coverage until October when my insurance renews.  I have applied for short term disability but no idea what the statues of it is yet.  My Mom and Step Dad are currently covering gas and food but I have access to gas cards and food cards if I get to the point of needing them,  The donations I received early in treatment will be paying my monthly wage of which I am currently not receiving and COBRA.   There was a time that I thought it was silly that I was asking for financial assistance but obviously God had my back and knew that I would need it.  He put it on your hearts to donate to me and I will be forever thankful for your generosity, hearts, and assistance.  With this being said there is one more fundraiser coming up.  The Growler Guys Bend, East will be hosting a donation day for me.  If you mention this flyer or take it in with you Growler Guys Bend, East is pledging to donate 50% of the proceeds to me. You get beer and I get a financial cushion for whatever may arise, or to just get me to the new school year.  I call that  a WIN, WIN situation.  :)  

Yep, well that about it for a radiation/life update. 

Just something funny.  

Speed Bumps

Well It's been a little over 6 weeks since I came home from the hospital.  Recovery has gone a little like the hospital.....twists and turns.  I spent about a week at home with little appointments or much going on but since then I have had at least 3 appointments a week. 

My oncologist and surgeons wanted me to start radiation as soon as possible.  So I went in for one appointment to be mapped.  Mapping is basically when they take pictures with a machine looking similar to a CAT Scan machine and they use there super math and physic skills to determine how the beam should work.  During this first visit I could only get my hand to my forehead because my left side was still to stiff.  Which doesn't work.  They said the beam would shoot through my hand, which would not be okay.  They want to protect any part of my skin that doesn't need to be touched.  

Because I was unable to get my arm above my head my plastic surgeon approved me to start  Occupational Therapy.  The Occupational Therapist is also the lymphedema specialist.   I met with her and learned that the lymph system between the abdomen and the shoulders holds about 21-35 lymph nodes on each side of the body.  On my left side my surgeon removed 13 lymph nodes and on my right side he removed 21.  Which means I get to wear some fancy sleeves, when I exercise, if I start to swell, and if I am in the sun, or if I just have discomfort.  

The Lymph system.  If you look closely you can see white areas where the lymph nodes start and then how they circulate through the body. 

I have been seeing the Occupational therapist  (OT) about 3 times a week for the last 4 weeks.  My right side is about average for movement and has been since I started with her.  My left side is a completely different story.  The skin graft was and is so tight, and because it covers such a wide area it has taken a lot of work to get it moving.  The fact that I also had some of the muscle removed has also caused some mild movement issues.  The therapist described it as being angry.  The muscle is mad which makes it retract so I am needing to work hard to  teaching it to move.  I have been seeing the OT 3 times a week for an hour and doing exercises at home.    

The day I bought my compression sleeves 

Pretty tight, not so sure about them

I am powerful and strong 

I went back in for a 2nd chance at radiation mapping  a couple weeks ago and was able to get my arm above my head to a position they could work with but the machine broke after just a few pictures.  So again I left with a rescheduled appointment. 

During the waiting process for radiation I have continued to see my plastic surgeon, my general surgeon, and my oncologist.  I have completed two cycles of my chemo medication and am healing well. 

I have had some effects from my chemo pills.  Lots of fatigue, some head aches, and foot pain to the point of being unable to walk. My oncologist has given me some ideas for reducing the feet issues so hopefully once I start my 3rd cycle it will work.  If not she will lower my dose, but really wants me on the does I am currently on. 

Another preventative measure added to my regime is a shot (spacing the name of it) and will continue to receive this shot every month for a while.  The shot will prevent me from having a menstrual cycle.  My oncologist doesn't want any surges of hormones in my body right now.  

If you remember from my previous blog my oncologist was going to send off my tissue for further review as to why the cancer had spread from one side to the other and why it had grown so quickly between chemo and surgery.  She did this and was given no further information, the results didn't allow for her to make any further decisions then she has already made. 

For many forms of breast cancer there our guidelines on how to treat and then if needed the oncologist can use there knowledge to adjust here or there but with mine being such a rare type mixed with not having even the typical hormone markers for that type of cancer and then have it quickly grow after chemo it  has become more difficult for my oncologist to follow those guidelines, or even find another treatment measures for me,  she is really just trying to hit me with anything she thinks could help.  In her words the tumor didn't give a sh** about anything and we need to remember this while trying to combat it.  My oncologist is fantastic and I believe she is doing everything she can to make sure we prevent occurrence.

I have recent received another CAT Scan of my neck,chest, and abdomen and the scan was CLEAN! so far we are winning in spite of how nasty this cancer was.    

Last week I went in for my 3rd attempt at radiation mapping.  This time, though I didn't even get to see if my arms had improved because my radiation oncologist came into the room to chat with me.  He informed me that he didn't feel comfortable providing radiation in Bend.  The machine they have wouldn't be appropriate for my case. The placement of my skin graft is right over my heart so this caused him some concern.  He also worried about the dosage being accurate on  both side of my chest because there is a visual dip in the sides.  It is not common to treat bilaterally with radiation, because it is not common for breast cancer to spread from one breast to the other.  I am just that special! :) 

 I took the below picture to give you an idea of what it looks like. By no means do I want anyone reading my blog to feel uncomfortable but I do want everyone to understand that although any breast cancer diagnosis is scary not every breast cancer situation is the same and just like anything else treatment is different for everyone depending on many variables.  This is the reality of mine. 

 He said he was willing to treat me in Bend but he wouldn't feel confident and he said I could be on the radiation bed for a few hours a day.  He explained that there are complicated cases that make treating with radiation difficult and  I am one of those complicated cases. So I agreed to go to OHSU for a consultation.  

I had the consultation this week.  I wouldn't say I was convinced that OHSU was any better then Bend but I trust my doctor. They have not let me down in the last 8 months and I believe he is not letting me down now.  I am trusting that the radiation oncologist at OHSU and in Bend know far better then myself what should be done and because I have the relationship with my Bend doctor I am confident in this decision. Really, the decision is not based on doctors anyway it's based on machine availability.  

 The doctor was nice.  she asked me what I understood about needing to be treated by OHSU and not Bend.  They explained that treatment would be Monday-Friday for 5.5 weeks and they explained what type of machine would be used for my radiation, it's called spirometry-monitored deep inspiration breath-hold (DIBH).  It expands  my chest and hopefully will guard more of my internal organs.  

It's a machine that looks like a snorkel of sorts.  The piece fits in my mouth and I breath into it.  This devise is the whole reason I need to be away from my children roughly 27 days. 

I left the consultation with an appointment for the next day to be mapped/simulated.  They were quick to get the process going and even hooked me up with 3 different social workers to help me locate lodging.  They also said they would do there best to give me early Friday appointments and late Monday appointments to give me as much time at home as they can.  Everyone was friendly, making sure I knew what I was agreeing to.  Although, I already knew what I was agreeing too and any mention of me having young children and the long process brought tears to my eyes. 

Both girls are still in school for another month and a half.  If I take Blakelee, who is really struggling with me being away from me at anytime, then Boston will feel as though she is less important.  I can't home school Boston.  We do not mesh in this way and she is in a wonderful school and program.  I could home school Blakelee.  We do mesh in this way but she to has an amazing school and I have been told I won't feel well, I will be tired, and possibly in some pain.  Therefore, I don't feel like I can be effective if Blake were to go.  which leaves me with one decision to leave my girls home during the week with family.  Now I know what some may be thinking.  It's not that long, they will be fine with family, it's 6 weeks in the scheme of your life. With all of this being true I still can't help feeling awful.  I don't want to be away from them. Most of there life I have been the primary parent.  I did it all.  I have always leaned on grandparents for assistance but in general I am the provider.  Boston's dad lived in Hawaii for a few years and Albany before that.  Blakelee's dad makes choices that are unsafe for her.  So I became the consistent parent, making sure everyone was safe, secure, and thriving.  Luckily, Boston's dad has moved back and is living close enough to help during this process.  Diagnosis has taught me allot about letting go and my girls will still be okay but this is a huge step out of my comfort zone and our general routine and I am just devastated about it. 

I finished the consultation with an appointment the next day to be mapped/simulated.  

I went for the mapping appointment the following day.  It was hard.  It was accepting that I was going to be gone for all those weeks.  Missing out on the morning routines, the bedtimes, and the events.  

The things that once seemed so mundane prior to diagnosis have been the things I want the most in life now.  I crave routine, and work.  Waking to an alarm that says I am going to work and not an appointment.  Feeling refreshed and ready for the day.  Feeling like I am fully present in my kids life and not constantly worried or scared.   I want it all back and the day we headed to Beaverton for the official prep of radiation was a day that just felt like I was giving the okay to keep my life in   uncomfortable territory for another 2 months (ish).  

This may seem dramatic.  It is dramatic.  I will be home on weekends.  I will still see my kids and be apart of moments.  I am also accepting that it feels really large right now, and I am physically and emotionally tired, and that it's okay to be dramatic and feel like this is a really huge deal. I'm allowed to feel how I need to feel right now. 

The appointment went well.  The snorkel thing was just as they had described. A snorkel piece but what they didn't tell me about was the piece they put on my nose.  They plug my nose, I breath through a tube and then hold my breath for 25 sec.  Inside the snorkel there is this door thing that closes so I literally can't take a breath through the tube or my nose.  I do get to hold a red button and if for any reason I can't hold my breath anymore I release the button and I can breath through the tub again.  It was a strange feeling and took a lot of self control and self talk to tell myself that I was in control and could breath if needed but to not freak out and know I could manage the breath hold.  They also gave me "tattoos" little dots that outlined the boarder of the radiation area.  They will be there forever but they are so tiny I am sure I won't even notice.

One of three radiation tattoo's

This is exactly what the contraption looks like.  *image taken from the internet.

At this point I am just waiting to hear they are finished with the plan and receive a start date.  

So that's where we are.  Moving forward with some great news and learning to keep adjusting and accepting what is. 

Surgery, Hospital, unexpected turns

Where to begin...............
The morning of February 21st I was so calm. I woke up, took the girls to school, showered, came home and joked around with Rob.  My mom and step father met us at my house.  We drove to Bend where my step mom and dad were waiting for us.  I had what they call a centinal lymph node procedure, basically a dye was shot into my right  breast via the nipple and allowed the surgeon to see the path that my breast drained so that he was able to remove 2 lymph nodes.  Those two lymph nodes would be sent for pathology.  If they came back with any trace of cancer he would remove all of the lymph nodes in the drainage path on the right side.  This procedure only needed to be done on the right side because we already knew the lymph nodes on the left were infected.  After this procedure was completed my parents and I walked to the pre surgery waiting area and met up with my best of friends, my pastor, and prayer team person and friend Heather.   While sitting and waiting for the nurse to come and take me back for surgery I was so calm.  Nothing in me was that scared.  I can say without a doubt it was because of all of you!  I asked you all to send me love and you did so successfully that all I can think is you put out into the universe the love and support you all have for me and it affected me.  I was not alone that day.  I was being touched spiritually and universally.  For that I have no words.  I will forever believe that without all of you on Facebook and my phone, and the prayer teams across the United States praying for Me I never would have been as calm as I was.  I made it to surgery without taking an anxiety med that day.  In my world that is a HUGE accomplishment. 

The Mastectomy was performed Tuesday, Feb 21st.  Tumors in both sides had grown at a rapid pace since my last visit in my surgeons office and MRI.  When I had the MRI biopsy on my right side the tumor was 2cm when it was removed in surgery the tumor was 7cm.  This growth was over, roughly, a 2 week period.  My surgeon did not give a measurement for the left side, Large!

When I came out of surgery on the 21st I was given the news.

My right side was a beautiful surgery.  My surgeon had removed the tumor and the rest of the tissue, along with lymph nodes.  The incision closed nicely and 2 drains were placed.   Cancer in the right side was gone. 

My left side on the other hand was much to large to close.  My surgeon, who had a release to perform a skin graft if needed, did not want to perform the skin graft until he knew if the margins, the outside skin tissue, was clear of cancer.  So my left side was attached to what they call a wound vac and the open incision, tissue, hole (whatever you want to call it) was left open until my surgeon received news about the remaining tissue.

Wound Vac machine and then it had a tube attached to me and going into a canister looking thing.

During my surgery my surgeon called people in for 2nd opinions.  My radiation oncologist and my plastic surgeon were both called into the OR to give opinions.  I feel grateful to have a doctor who cared so much that he got a 2nd and 3rd opinion.      

On Thursday Feb. 23rd my surgeon came in to my hospital room and said  "well kiddo I don't have good news"  The skin remaining on my left side was not clear.  It still contained cancer cells.  As my surgeon told us the results and the next step I was in shock.  I sort of just stared at him.  Not sure what to say.  How in the world did this cancer grow so much? How did my 16 rounds of chemo not kill it.  It had already showed up in the right breast,  WHY WOULD IT NOT GIVE ME A BREAK!  

We felt that in not so many words that my surgeon was saying that he didn't trust he could get clear margins and that maybe we were better off just getting the wound closed and me onto radiation.  He left my hospital room that night with my whole family feeling the same way.......worse case scenario, the next day we would be going in to close me up and pray that radiation would do what  it needed to do.  Without allowing this nasty cancer to spread any further. 

I truly believe this cancer is baffling all of my doctors.  It is so aggressive! 

That night my mom and Michelle gave me a sponge bath as requested by my surgeon (More on this topic in a blog post to come).  I ate dinner and I went to sleep with my mom and Rob laying next to me in my hospital room. Everyone else went home.  All of us a bit scared but ready to face the next day. 

The next day prior to my 2nd surgery I received a phone call from my oncologist, FINALLY! I hadn't heard from her since we found out the cancer was in my left side also.  After the news from the previous night I needed to speak with her.  I needed to know she had a plan outside of surgery and radiation.  When she called she informed me that she was in California at a convention but was fully aware of my situation and had been thinking about it.  She had 2 options off the top of her head.  One was to place me on chemo pills before and during radiation. Two was to send off the tissue to a specialized lab to really see what the make up of this tumor was because it's aggressiveness was even more then typical inflammatory breast cancer.  She is wondering if it has make up of a tumor not consistent with breast cancer but of one you would find in another area of the body.  If so there is always an option to treat me with more chemo therapy that is not typically used in the treatment of breast cancer.   In the end she decided to do both.  She is going to have me on chemo pills at home and she was sending my tissue off for further testing.  I have not yet started the chemo pills because she has been waiting to hear from my surgeon.  She wants his okay for me to start them prior to fully being healed.  Apparently, the pills do not mess with the white blood cells so she thinks I would still heal nicely and that my surgeon will be on board but we are currently just waiting.   Speaking with her was a relief. I needed to know she was on board with me and she made it really clear that she is.  She said "im here with you, we are together fighting this" I know she has a ton of patients and really I am just another one but in that moment I felt like I was the only one and that is truly what I needed. 

This packaging makes me feel safe......Chemo Pills

Friday, Feb. 24th I went back in for my 2nd surgery.  So for those who have not had a surgery lately or any at all the pre op portion takes you through a bunch of questions along with signing of agreements and telling multiple people what will be happening in the OR. You also see and speak with your doctor, the anesthesiologist, and the OR nurse. During this time I signed a paper stating that I would be having a skin graft from my thigh and placing it on my left side, along with the removing of another inch of skin.  Then my plastic surgeon came into my waiting area and informed me that I would not be having the grafting that day.  They were going to take another inch of skin and send it for pathology.  My plastic surgeon was the one who was going to perform the skin graft and my surgeon was going to assist him but in that moment I found out that my surgeon would be performing the extra inch of skin removal and my plastic surgeon would be assisting.  I was shocked.  Why were they going to do this.  What did it matter if my surgeon didn't think he could get to clear skin. This meant another surgery.  More waiting, more hospital time.  Frustration was all I thought but did not question because I fully trust these doctors.  They have gained my trust and I was wanting them to do what they felt was best to get this cancer out of my body.  Needless to say I went into surgery a little confused and a lot frustrated and came out the same way.  Man, was I angry when I came out of anesthesia.   My previous surgery I was not this way.  I did not feel angry when I was waking up.  Possibly because I felt relief that it was over, not knowing right away that it wasn't. 

Saturday, Feb. 25th.  My surgeon came into my room on his rounds.  He checked my wound vac and he spoke with me about the surgery.  Apparently my plastic surgeon did not want to try and attach grafted healthy skin to cancerous tissue.  He wanted to try for clear margins.  My surgeons response to this was "I hope we made the right choice".  Later that day my plastic surgeon came in and explained to me his side.  Again, I trusted my surgeons and it made me happy that they were working together.  Although I was angry with the sudden change the day prior I felt okay with there decision on Saturday.  Both surgeons said they would be bugging pathology all weekend but we probably wouldn't know anything until Monday. 

Sunday, Feb. 26th.  my wound vac started acting up.  It was loosing suction and I was stressing out.  One nurse came in and messed with it a little and it continued to work for a couple more hours but by Sunday night it was acting up again.  The best part was that the wound care nurses are not there on the weekend and therefore these type of scenarios are left to the nurses on that floor.  So most of my day I was being touched, and poked, and prodded  because they wanted to fix it and because it needed to be fixed.  None of the nurses wanted me in pain but they needed to keep the wound vac working at least until Monday when the wound nurses were back. 

Rob holding my Wound Vac and walking me....errrr walking with me. 

Monday, Feb 27th- the wound vac worked all night, slowly, but it worked and a wound nurse came into my room pretty promptly on Monday morning.  She was able to fix the vac and I was able to let down my stress level.

Also on this day my surgeon had come in bright and early to let me know that he had not recieved the pathology report but that he would be back in tonight to let me know if he had any information.  Well in the middle of the day I was taking a nap and as I started to wake up my family was gone from my room.  I didn't think much of it and just slowly started to wake up.  As I started to open my eyes my mom and sister opened my hospital room and my mom flashed a sign at me that said "CLEAR MARGINS!" They had been in the hall talking to my surgeon on the phone. 

Just noticed I wrote the wrong date on the paper. 2-27-17

 The risk he had agreed to take with my plastic surgeon got us clear margins! I had no words.  I just covered my face and cried for a moment.   I still have no words to describe how I felt in that moment, how I feel today.  It was something I was so angry about and yet gave it up to my surgeons and trusted them to make the best choice for me and it worked.

 Now as I have said before I am working on my faith.  I am learning everyday and trying hard to understand how to trust in God and how he plays a role in my life.  So if I reach deep into what I am learning and try to bring that to the front of this experience.  I want to say that God had his hand in that Friday decision.  He guided the decision of my surgeons.  Maybe that's part of learning how to trust in God, trusting in the people he made doctors.  I can't even pretend to know how to fully give it up to God but I'm learning and experiences like this only show me how to keep trying.

Tuesday, Feb 28th.  3rd surgery day.  Surgery went great.  I went in ready to close up the wound and be finished with surgery.  Doctors and nurses both warned me that the graft sites on my legs would be more painful then the actual left side of my chest.  I was ready and accepting of that.  Surgery went well and as expected.  I woke up a happy camper, making jokes with the nurses and my plastic surgeon.  I don't remember them all or even that I was being silly but apparently I was according to my mom and Rob.  I was wheeled back to my room and really that's about all I remember from that night. 

Everyone was correct, the legs proved to be the most uncomfortable part of all three surgery.  Getting up was difficult, walking was difficult and on Wednesday the plastic they had placed as a protection had formed a hole and the blood was coming out on the left side.  This alarmed my doctor and by Thursday he was placing holes in both plastic pieces on the right and left and draining the blood.  Once he did this he said everything was okay.  I was not loosing more blood then anticipated.  He wrapped my legs really well and I put on spandex pants.  I looked ridiculous  (the pictures don't even give it justice) but I had fun with it. 

 By Friday afternoon the fun was gone.  The plastic on the left side had started pulling down and I was feeling everything rub against my open skin.  Painful is not even a powerful enough word to describe what I was feeling.  My day nurse was so sweet.  She did her best to keep wrapping my legs with different things, trying to find the best option with least pain but the more I walked the more the plastic pulled down and the more pain I had.  By Friday night I was done.  I went to the bathroom and pulled my pants down the pain from barely touching the area shot through my body and I couldn't help but break down.  I was done.  The pain had proven to beat me and I couldn't take anymore.  I couldn't move, I didn't want to have anything else to drink because I didn't want to go to the bathroom.  By this point my night nurse had came on shift and was trying to call the on call doctor to see what they could do.  Apparently, they are informed not to touch the plastic so they needed approval for anything.  she was given approval to put this wet like, fabric, yellow stuff on the open areas and to wrap me up.  Once she did this it felt so much better.  So Saturday and Sunday the nurse and I spent the days patching areas that hurt and recovering my leg.  It worked, maybe not the best, but it worked.  Sunday night rolled around and I started to experience more pain.  So my night nurse and I started to examine what was happening now.  So looked into it and she felt it was the yellow stuff hardening on my leg now.  So she started to try and take it off.  Thinking we could remove and put softer stuff on.  Well this was awful.  It peeled scabs and hurts so bad.  She tried getting it moist but that wasn't working.  In the end we gave up and we re wrapped my leg.  I was just careful not to move around a lot that night.  When my surgeon came in on Monday morning he looked at the yellow mess and said he would have to think about that area and how to get it off.  He said he would be back to take my wound vac off and wrap my leg and chest.  Luckily, I had a brilliant nurse who put a ton of neosporin type ointment on it and we let it sit.  I realized that once this was working I could peal off the yellow pieces myself and I started peeling at it all day.  It was still painful but nothing compared to the night before and I wanted to get it done instead of the dr coming in and ripping it off causing even more pain.  It worked.  Minutes before my surgeon came into my room I had managed to get all of the yellow stuff off.  My leg was not happy but I felt accomplished.  Warning Pictures may be graphic for some. 

Monday, March 6- my surgeon removed the wound vac.  He examined the skin graft.  It had taken almost by 100%.  He told me it wouldn't look good to me but that it was beautiful.  I wouldn't know because I have not looked at myself and have no plans on doing so yet.  As of now I can't anyway.  I am all wrapped up.  The nurse and my mom agreed that it looked good.  When you are in a situation like this all you can think is.......how can anything look good.  

The removal of the wound vac did not hurt as bad as I had anticipated.  the only time I really was in pain and cried was when they removed the tube from my skin.  It was a deep pain.  The removal of the stitches and staples were fine.  Once it was removed he just wrapped me up and I was finished.  In that moment I got dressed and felt this wave of emotion of come over me.  I just started crying, couldn't stop myself and couldn't help it.  So my surgeon gave me permission to spend one more night in the hospital and as crazy as it was I needed too.  It was late in the afternoon anyway and I needed to just rest and breath. 

Tuesday, March 7th- I went home.  I was home by 10 and spent the day resting.  Bring home has proven to be a challenge.  I want to try and do to much.  Right after I take meds I probably push myself a bit to much.  Actually sleeping has been okay.  Got myself a cozy set up in my bed and my aunt brought me a small recliner that has been wonderful.  I have different appointments coming up on various days but for the most part I am just working on healing and getting my arms above my head.