Good news/Bad news

I had my appointment with my infectious disease Dr. today.  When I first go into the office I check in and get a copy of my blood results.  My results were wonderful and I was so happy and excited to know that this portion of my recovery is coming to a close.  Once the Dr. came into my room to review everything, he agreed that my blood results looked great.  Then I felt like he kicked my feet right from under me.  He said that I have to monitor myself and come in if there is anything wrong since I have a 55% chance of getting the infection back within 3 months-6 months.  :(  Those aren't good odds and I do not have good luck to beat those odds.  Needless to say, I was really upset.  I feel better now that I had some retail therapy and my little guy was being so good while I was taking my time scanning the racks.

I need to take the best care of myself.  We've been enjoying one of the farmers markets here so we already have fresh fruit. :)  Exercise will be hard, especially upper body, but I will do what I can.  Now that the initial shock of the high reoccurance rate of an infection, I am in high spirits.  I just want to make sure that I do everything that I can to get this infection out of my body! 

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!! :-)

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.

Update on the last few days...

Its been 3 days since my last post, I've been so busy and tired with everything since!  I'm tired right now, but I feel like I need to update my blog and continue on. 

I woke up Thursday morning, I had an emotional day, the day before when I found out about my infection and all of the possible outcomes.  I woke up pretty positive then I get dressed to start my day of appointments and I was draining from my incision on the left side.  I woke up my husband with my whine - 'OMG - seriously!!!!'.  I calmed down a bit when I noticed the leakage wasn't bloody but it was yellow/orange and matched the color of my drains on the right side.  So I reinforced my bandage with gauze and awaited my nurse sister to whine to her about it. 

I had my sister pick me up for my appointments to get  a CT scan and a picc line.  She wasn't too concerned as she mentioned - better out than in and we figured my drain might have come out too early.  So on to my first appointments...

I had a bit of a wait at the radiologists since I was squeezed in for that appointment.  The picc line was put in first, the actual procedure was not bad at all, however the 30 minutes of waiting to get the picc line was pretty painful.  I had my right arm, because the infection is on my left side, completely to the side of me at a 90 degree angle.  I hadn't stretched like that since my surgery, it was tight and painful.  Other than the long wait, that was the most painful part.

Next was my CT scan; I had never had one before and didn't know what to expect.  My scan was 'with contrast' so I was injected with dye or some sort of liquid, I really don't know.  Luckily the tech warned me of the effects of this!  Once I was injected (in my handy picc line) I had a warm sensation in my chest all the way down and it felt like I had pee'd myself because my bottom half was warm too!  Made me chuckle because I had to remind myself - I didn't pee ... I don't have to pee ... but hold it either way! 

Next was my appointment with the nurse at the infectious disease doctor where I would receive my first infusion.  I also notified the Dr. of my drainage so he could culture it and see exactly what my infection is.  That was the one thing about the leaking.  I also received a good re-wrapping of my gauze and bandages which always feels good; well, unless its too tight.

At this point of the day, I am kind of excited about my picc line - no more getting stuck with needles! (I'll post a picture in another post)  and that I was almost done with my day of appointments.  The nurse gave me directions on my antibiotics and how to give myself the IV since I would be doing the rest of the infusions at home .. by myself... yikes!

The first antibiotic is Vancomycin which would take an hour in the IV drip and afterward I would have Cefepime which would take 30 minutes.  I will be doing this every 12 hours ... so 3 hours out of my day getting loaded up with antibiotics.  Between the 2 the side effects (that shouldn't cause alarm) are itching, acid reflux, and fatigue.  These meds would affect my GI tract so probiotics were recommended.

Finally, at 5pm I was finished with my appointments!!!!  I was so tired and walked out of there with 2 large bags of a weeks worth of supplies. 

When I got home, I noticed that my drainage on the left side was seeping out at a rapid speed.  I ended up using maxi pads to help soak up all the liquid, which I had to change multiple times.  I soon figured out that I needed to lay flat to slow it down.  Luckily I had an appointment with my surgeon the next day.  I was a bit nervous to find out what the next step was since all this drainage was coming out and really wasn't a good thing.

At the Drs office for my drainage the nurse ended up massaging all of the liquid out of my chest.  Dr. O'neill explained to me that she stitched me up with 3 layers including some adhesive mesh to keep my incision closed.  Since the liquid had to go somewhere it seeped out the incision, but there wasn't a hole in my incision and nothing could get in.  Depending on how much I would need to be drained would determine the next course of action - massaging the liquid out again or putting new drains in, in the area that would catch the drainage, this time.  Given the amount of liquid that was being drained in my drainage tubes, it was correct to remove the drains.  It seems that the drains weren't in the area that they needed to go.  The Dr. didn't do anything wrong, it isn't an exact science as to where you're going to drain.  So to finish this up, I was drained and sterry*? stripped back together and I see the Dr. back on Monday.  I'm thinking I am going to have to be massaged again, but we'll see! 

I will have to finish this up tomorrow of today's activities.. I am exhausted!!!!

And the day started off so well ..

I woke up feeling decent, finally after 10 days had a BM (TMI - whatever I showed you my foobies) so I was feeling so positive that my healing was gaining momentum.  Then I went to the infectious disease Dr.

So I have cellulitus*. An infection in my tissue.  The Dr poked me all over my chest, it was painful!!!! So what does this mean? Well, tomorrow I will be getting a chest CT scan and a picc. I am told the picc is an IV that is in your arm and is threaded up to your shoulder. They do that so when I get the antibiotic IV, I already have the line in and it is located in a central place.. my shoulder. The Dr. projected 6 weeks of treatment since I have expanders in.  There is a 50/50 chance that it will work,  however the Dr. said he has a good success rate.  If it doesn't work then my left expander will have to be removed. (This is when the tears started.) Depending on my CT scan I might have to have the fluid drained too.

I am hoping .. PRAYING this is all just overkill.  I know I have an infection and my current meds didnt work and I need more meds but I am pretty upset and scared about this.  Better safe than sorry.

I will know more tomorrow of the specifics tomorrow.  My entire day will consist of test and then getting the first infusion. 

As my sister reminded me - I did this for all the right reasons!  I keep having to repeat it to myself.