Emotional Release ..

I have tried to be SO strong through out this whole process with my PBM (prophelatic bilateral mastectomy).  After the initial shock that I have the BRCA 1 mutation and knowing what my options were. to choosing my coarse of action, I have been positive, upbeat, and motivated to get this done.  Knowing that I have the genetic mutation was very emotional since I knew what my future held.   I thought knowing if I was positive or negative would lead to a huge relief, even if I was positive, at least I knew!  The positive result didn't come as a shock becasue I just felt that I had it.  I have had enough obstacles and struggles in my life that the cancer gene would be one that is written in my life story. 

Back to my decision.  I knew that I had to have a mastectomy and a hysterectomy (ovary removal in a year or so) to really fight cancer before it started, though it wasn't quite sitting well with me and no research and googling would help.  Once I had my breast MRI  and what seemed like forever waiting for the results, I knew that I can't live my life waiting for test results until cancer showed its hideous head.  After a series of conversations and soul searching I knew I needed to have surgery and I was finally ok with losing my breasts.

Pre-surgery there were a few moments of being emotional but it was short lived.  I knew surgery made sense; not to everyone but to me... it just made perfect sense!  Since my surgery my only emotional moments were from pain, I was sick of pain, I was sick of being useless, I needed hugs and human contact, I didn't want to be delicate that people were afraid to touch me.  I was/AM a strong woman, physically strong!  Even with the tears of pain, I still was strong with my decision and positive about my scars, my battle wounds.  It is what it is .. I hate that saying, but it fits.  I didn't feel self consious with my flat chest and my picc line hiding on my right arm, this is me, I am a fighter that threw the first punch!  So what!

Until Friday ... that night hit my hard!  I'm sure I previously mentioned that I play/ed softball twice a week, one night of which was with my husband ... Friday nights.  I have gone the last 3 Fridays to watch my team and meet up with friends that I knew were playing on other fields.  It is SO hard to watch my team no longer be mine, I was a spectator, in the stands, I wasn't part of this team any longer.  So many times I thought I should just try to throw and hit to see what happens... will it really hurt?  Will the pain worth it?  I didn't, though.  I was still trying to be me, sitting in the dugout, being silly with everyone .. my norm .. but then it came down to one of the guys giving me a hard time.  We usually go back and forth, no hurt feelings; but mine were hurt.  I was overreacting, maybe but I couldn't handle it.  All of my joking around about myself and surgery (humor helped me through it) left me wide open.  I wasn't prepared for someone else to prove to me that I couldn't play or mocking my openness about my PBM journey.  (still overreacting, I'm sure) But it hit me.  I'm not the same, I will never be the same again.  I have chosen to cut my breasts off and left with scars across my chest.  Breast cancer isn't a light subject but some people don't care like I do.  They're not passionate about prevention, finding a cure, and understanding the emotional toll it takes on a women.  My humor to help me deal with it was my armor against all of this emotion and it was torn down on Friday. 

Do I regret my decision, no, and I would do it again if given a choice.  I made the right decision, no doubt, but being proud and wanting to yell my decision and breast cancer awareness across the roof tops, I would change that.  That would be my armor as this was a personal decision.  I love blogging about this even if this is just for myself but those who read my blog or come across it share similar passions and I am helping someone with their fight as others have helped with mine.  Right now I don't feel like things will be normal again, I feel that I will gain a new normal, I just haven't yet.  My battle wounds will get prettier and I won't get so emotional but I will also stop going to Friday softball.  Its hard, no doubt, but its not too hard to get through this.  I am a strong women, emotionally strong too.

Good news and annoying news too.

I was supposed to have two appointments today, both I was looking forward to.  I was supposed to have my first inflation today, it was postponed last week, and now it is postponed AGAIN!!!!! The supplies are in backorder from the manufacturer. I'm so annoyed and a big upset because I am ready to move forward. I'm feeling good and have the majority of my range of movement back.  This puts me 2 weeks out from my projected implant date in October.  I think my itty bitty foobies are cute but starting to pump them up is exciting!

So the good news ... The Dr. says I only have 2 weeks left with my infection and my blood work showed much improvement! My white blood cells are still low but should be back up with todays blood test since I reduced my infusions.  I thought after last week my infusions were going to be extended so YAY! Good news!! :-)

Updated Pics

I took a few new pics of my foobies.  They are healing up well.  Very excited about my first inflation!  I would say I am ok with my appearance; I wasn't entirely proud of what it was before and the scars don't bother me.  At this point it is only going to look and feel better and I will be proud of that! 

You can see how swollen my sides are because of the indent from my sports bra. :-/

Left side.

 Right side.

My meds changed again

Its been another few days since my last blog, I've been busy with various things and a bit lazy too.  Thursday was my appointment with the infectious disease Dr.; one of my normal weekly appointments.  My bloodwork came back with not so great news; my vancomycin levels and white blood cells were low.  Last time my vancomycin was low the Dr. increased my infusion to every 8 hours, instead of 12; 3 times a day.  Since my white blood cells were so low, the Dr. decided to go back to doing my infusion every 12 hours.  The vancomycin was doing more harm than good.  Once thing that confuses me is, how beneficial is the vancomycin to me if those levels are too low too?  I know my blood cells are way more important, but I also have an infection I need to fight.  This week I am anxious to go to my appointments.  Physical therapy is fine, just time consuming and a bit painful.  I am supposed to see my surgeon for HOPEFULLY my first inflation (keep your fingers crossed!!!) and then there is my infection disease Dr.  Both of these happen on Thursday. 

I have noticed at night I have been waking up with a lot of pain.  I think I found out what it was.  I have been trying to sleep on my side and it shifts my expander just a bit.  When I sit up or lay flat, the expander shifts again under all that muscle and this makes for the horrible pain.  Sleep is hard, I have to lay flat on my back, like I am in a coffin.  Often I am uncomfortable.  I used to sleep on my stomach but not now.  I actually tried laying on my stomach, it didn't really hurt, it was just weird for me.  I think my days of sleeping like that are over. 

I will post some updated pics tomorrow, maybe Tuesday.  Nothing has really changed just some healing and the sterry strips and mesh is off my incision.

Frusterated after the last few days

I haven't blogged for a bit because I really didn't have anything new to say well other than complaining.  Not that I won't be venting here but the straw has broke the camels back and now I am frusterated!

I'm not in too much pain.  It hurts to lay on my side, reaching up and pulling something down, like the back of my SUV (big ouch!) I'm still swollen and get more so when I am active, but nothing is excruciating... take that back, when my son slams his head on my chest - THAT is excruciating! 

I'm still doing my infusion three times a day and I feel that it is running my life.  I have to sit here while the dishes are piling up, here my kids whining cause they want me to get them food or do something for them.  So by the time that I do have available time there are more pressing stuff like eating, showering, appointments, taking or picking up my daughter from school, breaking up a fight, and then comes the pick up and cleaning.  I tried to sweep yesterday, it hurt a little bit but mostly weird because my muscle was flexing and it makes my expander tight.. its kind of hard to explain.  I don't think I am quite ready for those tasks - sweeping, mopping, vaccumming.

Saturday was our state fair - FUN day!  I was feeling good and just in case I saved my last two pain pills for today because of all the walking and I needed them.  It was a great day in the mid 80s and not a cloud in the sky but a bit windy (I hate the wind).  My infusions were a bit problematic.  I started my morning infusion in the car on the way there; its a little over an hour drive.  I wasn't able to put my IV bag up too high so my drip was slow.  Normally it takes me an hour and a half between the two antibiotics.  I was about 30 minutes longer than I should have been.  What a sight - my IV bag and drip hanging off the hook in the car.  lol  Then there was my 2nd infusion, I wasn't going to stop my kids fun to go home and do this so I went to my parked car, hung up my IV bag off the top of back door of my SUV (this is how I discovered that pain) and hooked myself up.  Of coarse I had weird looks and stairs but atleast I wasn't going to the car to chug beer so I didn't have to pay $4. a pop.  It was just some antibiotics.  Overall it was a good day.

The next day, Sunday, I woke up with a heat rash.  Really, does every adverse reaction have to happen to me!?  Why can't I get the 'loss of appetite' side effect of my meds!?  I hope its a heat rash that is, a rash is also a side effect of the meds, not necessarily brought on my the heat or sun.  I am so uncomfortable beyond what I already in.  Itchy and gross!  And now, because of the antibiotics, a yeast infection!!!!  (TMI - whatever)  I have been taking AZO yeast homeopathic meds once a day to prevent this from happening because I knew it was very likely and I already had meds on hand, but still - Really... when it rains it pours!  UGH - gross! 

Now today, I went to physical therapy and it went well and I was looking forward to Thursdays appointment with my surgeon for my first filling!  Nope - I have to wait another week because the inflation supplies are on back order.  C'mon peeps - who's keeping track of supplies!? 

So there ya have it.. not too much going on. 

My pain explained

I had an appointment with my general surgeon this morning, for a wound check, and complained about the pain on my sides.  Its swollen, tender, and feels warm.  Dr. O'Neill explained to me that she put 10-20 stitches on my sides to keep my expander's from going to the side.  AH - HA!  She said she normally doesn't place those stitches in cancer patients but since mine is prophylactic she chose to do that to keep them in place and it also gives me cleavage!  I like my little cleavage. lol  My wound looks good, everything is healing as it should  and in 10 days I will have my first inflation!  Its only 50 cc's on each side, but I will take them!  I will be posting pictures!!! 

As far as my mastectomy is concerned, I feel good.  My range of movement is getting better by the day!  At times I feel stretching, pulling, and the expander, but it just needs to loosen up and I won't experience that any longer.  The same goes for my sides where the stitches are.  I notice if I am too active I start swelling.  This is normal also.  Dr. O'Neill explained that there is a lot of friction and movement going on which causes the swelling.  This is a good thing because I am getting stretched out. 

My issues with everything really stem from my infection which makes this so frustrating!  Fatigue, headaches, nausea, and a bunch of other things.  I am taking probiotics for my digestive system and another one to prevent a yeast infection.  I have made B12 a big part of my life which has helped with the fatigue and I can't seem to get away from napping.  A minimum of 4 weeks left of my treatment, I am definitely counting down! 

If I wasn't fighting with my work about paid disability, I would say that today was a really good day.  I am confident that it will be getting better and better.

Waiting for my IV drip to stop

Its late here and I am very tired but I have to sit here and give myself these antibiotics.  I have only been doing this for a week and I am frustrated with it.  I had my infectious disease appointment today, my culture and CT scan came back normal (YAY), my white blood cells are good, there are a few others that are normal but my blood work shows there is still infection.  My Vancomycin levels were low so the Dr. increased my daily intake.  I will give myself 3 IVs of that and 2 of my other meds.  That is 4 hours being strapped to a tubes!  There is no way I can return to work with having to take this med in the middle of the day.  I guess that is the bittersweet part of the deal lol . 

I also had my physical therapy appointment today, it went really well!  I feel stronger and able to move more.  I think part of my lack of movement is fear; fear that it will hurt or tear something.  I can definitely feel the expander under my skin when my muscles flex, its more awkward that painful.  I just need to get in my head that this is the new, temporary, normal.  I even walked over a mile today!  I can walk more than a mile but with the lack of energy I have because of the meds, I am just too tired to really push it.. but not today! 

Yes, I have an infection, but I have the means to get the medicine.  The medicine is time consuming, but it isn't chemo therapy.  Yes, I have the BRCA 1 mutation, but I have the support and opportunity to fight for my life before any cancer could grow.  I do not have breasts, but I think my little foobies are too cute!  I have humor in my life and I do not have cancer in my life... I do not and will not get breast cancer. 

Physical Therapy & New pics

It is so great having my drains out!  I don't have those bulbs under my shirt that make me look like I am carrying an alien baby.  lol  I have also had my warm shower even though I can't soak my incisions it was still a relief!  I am able to wear a sports bra with a front opening but it is painful because the location of my drain wounds.  I hate the bandage wrap because it irritates the sides of my chest but between my two choices, it's the less painful. 

I have noticed that I have feeling in my chest, especially where the incisions are.  I have a few numb areas but I am glad that I'm not numb all over.  When I get the chills I feel, what I call, phantom nipple pain. lol 

I had my first physical therapy appointment (other than a consult) yesterday.  Initially, it wasn't too bad.  I did the hand bike, I don't know what the official name for that equipment is but you get the point.  From there I did a series of stetches from every direction.  My right side is the most painful and I have the most restricted movement.  I was getting a bit emotional because I realized how long of a road I have to go.  Before surgery  I played softball twice a week, so for my right arm to be the weakest it reminds me that I have even longer to go until I can play again.  I know that my health is considerably more important than doing a sport but it is also a stress reliever and enjoyable for me.  I just tell myself that I would be out for much much longer if I was to get breast cancer. 

From the beginning for physical therapy until the appointment was over, I did feel like I had a bit more range of movement.  The very last thing that I did was have a therapist stretch me out.  She gradually stretched me further and further, so it was a step forward. 

Later in the day, I felt the pain and muscle exhaustion of therapy.  Even waking up this morning my chest felt heavy.  I take it as - hurts so good; I am moving forward.  I was advised to put a heating pad on my back for relief and given some exersizes to do at home.  For those who are going to have, or have had a mastectomy, stretches and exersizes are very important.

Here are some pictures.  This one is of me and my protruding bulbs.  SOOO glad I am past this.  These pj's are more tight fitting than my other shirts, obviously, but look at that thing!  This shirt finally looks normal on me!!!

I took this picture yesterday.  My incisions are quite symmetrical and the sterry strips are on the side with the drainage.  Since they were put on, I received minimal leaking, so the the massaging and strips worked.  The nylon on my arm is where my picc line.  There is nothing really I could wear that doesn't make it stand out but this is the most comfortable.  I know its weird but I love my cute little bit of cleavage!  lol 

Here are where my drains were.  It looks like I have vampire bites!  lol  I'm still a bit swollen on the sides.

I still haven't received a filling so the bit that is there is fluid.. I think anyway. 

More physical therapy tomorrow and I go to the infectious disease Dr. too.  I hope the culture and blood work come back with a good outcome and maybe my antibiotics will be cut back.  One could hope.

My son..

My 4 year old boy is so cute and funny!  Every time I go to the Dr. and something changes i.e. my drains removed. He said did your boobies grow? I said a little bit. He said let me see. I show him under my bandages then he sighs like it wasn't enough.  Lol Hes going to be so excited when I start getting filled up!! He makes me smile and realize guys, young and old, they're all the same. :-) 

Drains Out!!

I didn't expect good news going into my Dr. appointment today.  With my left side drainage issues I thought the nurse would have to massage the fluid out again.  I wasn't leaking any more so I wasn't sure where the fluid would come out or if it could be massaged out again.  However, the bit of fluid that is built up on my left side is just fine.  AND my drainage tubes from he right side were removed!!!!  I had two drains on both sides, the drains that were taken out today weren't completely drained.  One had little drainage, but the other was still producing 30 ml every 24 - 30 hours.  It has been 17 days since my surgery and Dr. O'Neill said that she doesn't like the drains to stay in longer than 2 weeks, which we have surpassed.  Reason being, infection is higher the longer they are in.  The fluid is coming out but bacteria may be coming up from my drains.  If I had any additional drainage then it would come out of the hole where my drains were.  I will update with pictures a little later.

I haven't been able to take a shower but I can tomorrow, I can't wait.  I have been getting clean but nothing is like just sitting under the shower head and letting the warm water fall!!  So excited lol

Tomorrow is physical therapy.  I am looking forward to it while also dreading the pain!  I'm ready to heal though. :)