Thing 1 & Thing 2

It's been a month since I last posted. In some ways a lot has happened, in other ways not much at all has happened. I am currently 7 weeks into my recovery from surgery. I *should* be doing great by now, but I am not. The swelling in my breast has gone down, and it looks like a smaller cantaloupe now- rather than a giant one.
  *Thing 1- necrotic tissue* The blood blister that I got right after surgery on the corner of my boob almost seemed like it was getting better, but in the end- it did not get better. It became necrotic- in other words, dead. The main part of the flap looks really good and healthy, but the corner of it that is where my cleavage should be- is the part that died. It is 1.5"x 2" big. The doctor finally decided that it wasn't going to heal on it's own, and that we would need to schedule a mini surgery for August so that he could stitch it all back together. The fun did not end there. In the office, he cleaned out the wound and cut out the necrotic tissue that he could get to. This left a gaping wound- as in: I would see WAY inside of my boob. It was pretty traumatic when I looked down to see that. It was even more traumatic when he began packing this hole with gauze- lots and lots of gauze. And then he told me that I would have to do this twice a day for the next two weeks. Usually medical stuff really doesn't phase me, but when he told me that, I almost threw up. I didn't even answer him- I just stared at him with large, terrified eyes. Jim was at work, and knew I had an appointment so he sent me an email asking how the appt. went. I responded that I could not talk about it. He replied back- you don't have to talk about it, just write it. All I could answer was 'no'. Before he came home I took a vicodin- not because I was in pain, but rather just so I would be buzzed enough to tell him what happened to me at the appointment. And then I made him change my bandage that night- all the while staring at the ceiling, so as to not accidentally catch a glimpse of the carnage. After that, I was on my own though. I had to buck up and do it myself after that because Jim had to work. It mostly happened like this- I would remove the tape and bandage, find a loose end of gauze, then close my eyes tightly and pull. And pull. And pull. That was the easy part- the truly gross part was shoving more gauze up into that boob hole. And if I have you truly grossed out by now- just be thankful that it wasn't anything you actually had to do!
*Thing 2- torn stitches* The second issue didn't appear until about 2 weeks into my recovery. I felt like I had pulled a muscle in my stomach- it sort of felt like it does when you get a side ache from running- only this was over toward the middle of my abdomen- just to the left of my belly button. I didn't really worry much about it, but then a couple of days later I was feeling my scar and noticed a huge, hard lump in my pubic area. When I talked to the doctor about it he said it was a hematoma and that the pain I was feeling was from some torn stitches, and that it would resolve in time. I also noticed a bulge in my abdomen- right where the pain was. For the life of me, I could not figure out how tearing out some stitches from the tummy tuck procedure would result in pain and a bulge up so high. The dr. didn't really explain any of that. Now, here I am 7 weeks into recovery and the pain is getting worse- though the hematoma is getting better. Of course, I was just in for a preop appointment on Tuesday, and the pain didn't start getting worse until Thursday night. Ugh! Well, I spent hours (HOURS) researching on the internet- trying to figure out the source of the pain, and why this strange bulge would be where it is. Then I finally stumbled across the answer. First, I must explain the reconstruction procedure more fully- I had wanted a DIEP flap- this is where they use no muscle, only skin and fat- as well as some veins. Well, he was not able to get the veins from the spot he wanted, so instead I ended up with a Muscle Sparing Free TRAM Flap. THis is almost the same as a DIEP flap, but they take some veins that are attached to the muscle- instead of teasing the veins free, they just cut a postage size bit of muscle out of the abdomen and use that for connecting the flap to the breast's blood supply. Well, I had no idea where the piece of muscle comes from....guess what- it's right where I have a bulge!

They say a picture is worth a thousand words, and it is true. As soon as I came across this picture on the internet I understood exactly what had happened. THOSE are the stitches that came undone. I am upset that he told me that it would just get better after awhile. My muscle has seperated and I have a bulge there. That shit ain't growing back together on it's own! So, after finding this I put a call in to the doctor's office. I talked to the nurse and explained everything. I am having surgery next friday to stitch together my boob, and I am really hoping they will be able to repair the muscle also. I really do not want another recovery from abdominal surgery but it hurts bad enough now that I am not walking much-so I am already screwed, I may as well do it all and get better eventually!

surgery

Wedensday morning, Jim and I left the house at about 4:20, to make it to the hospital in Dallas by 5:45. Check in went smoothe- I was given my gown and socks, then they sent me upstairs to wait.  The nurses were all excited that Dr. Duffy was doing my surgery- everyone there said he was very good.  That is very encouraging!  They gave me a xanax to calm my nerves but honestly I wasnt nervous at all, I was just excited! 
The doctor came in and had me get out of bed and take my gown off.  He then drew a bunch of lines all over me with a marker- on my tummy and both breasts.  The hardest thing in reconstruction is getting the crease of the bottom of the boob right, so he had to make sure to match it up with my existing breast.  The nurse came in and started my IV line.  Usually by this point they give you meds to knock you out.  This time, they waited until I was in the operating room, and moved over to the correct table.  I know it didn't take long- I didn't even count at all!  They said "think of a happy dream" BAM! I was out cold!
When I woke up, I wasn't in a great deal of pain- probably because they were using demerol instead of morphine.  Back in August when I had my mastectomy, I wouldn't look at the bandages or what was beneath.  In fact it was probably about a week or longer before I could bear to look.  This time, I wanted to look as soon as I woke up!  I was so excited!  When I did look, I immediately started laughing!  You may think that's an odd response  but here is why- I had a tattoo on my abdomen.  It was ugly and stretched out from 3 kids (really wasn't nice to begin with) it was a flower- I guess it sort of looked like a carnation.  Well, I had discussed with the doctor the location and he felt that at least part of the tattoo would end up on the flap he would have to make somehow.  Well, the flower ended up being smack dab in the middle- it looks like it is right where my areola would be!  Oh man- funny doctor!  It is really pretty awesome looking.  Overall surgery took somewhere between 4 1/2- 5 hours.  They expected it to take about 6, so less is good!  When they first had me in recovery I was in a warm room.  I don't remember feeling particularly uncomfortable but I know I remember them telling me they had to have the room warm, and if I needed to cool off, my only option would be to put my hands in ice water.  They also didn't want me to use my right arm because I might jostle the veins that the doctor had just spent hours connecting. 
It was very weird looking down and not seeing my big belly anymore.  It almost looked as though there just be a big gaping hole there because it was so small and flat!  I expected my incision to stretch from hip to hip, but it actually wrapped around the side and almost to the back of each hip- that is one LONG incision!  I had a cathetar put in during surgery on Wednesday and it wasn't removed till friday- they didn't let me get out of bed at all until Friday afternoon.  The one plus is that I still had my pain pump all of that time so I would just push it every 20 minutes around the clock, then doze off for about 10-15 minutes.  That was also helpful because I wasn't allowed to eat ANYTHING until Friday morning!  Not even clear liquids!  It was pretty brutal.  Ice chips only.  That was because during that time, I was still at risk for my flap to fail and in that case they would need to rush me back to surgery, and I would need an empyt stomach for that.  Oh well- give me the demerol pain pump please!  Also to ensure my breast flap was doing well, the nurse would come in every single hour with a tiny doppler and put it on my boob to make sure they could hear good blood flow.  Friday it changed to every 2 hours.
I was in the hospital until Saturday morning.  I still was not moving around well at all yet (did you read how long I told you my abdominal incision was?) but I needed to go home.  I was so dang uncomfortable in that bed that I was going crazy!  And overall it was a pretty good hospital with decent care except for the day nurse- I had her both friday and saturday- she wasn't too helpful at all.  I knew I would have a decent amount of help at home and I could sit in my power lift recliner that was much more comfortable than the evil hospital bed! 
Hospital food:  Once I was finally allowed to eat food, I could eat anything I wanted.  The hospital I was at had something called *room service*  We could order anything we wanted from the menu any time we wanted between 7am-7pm, and they would bring it up in about 40 minutes.    The food wasn't terrible, except for the pizza- ick!

Passing time waiting to go to the official pre-op room



Wheeling me away to the OR!



Bundled up in my warm room and warm blanket



Very happy about my pain pump

Pre-op

Today was my pre-op appointment, which of course means that surgery is coming up soon.  I have never really been excited for a surgery before but let me tell you- I am actually a little excited this time.  I was looking forward to this appointment because I really needed something to happen with my leaky boob.  I had decided that I would like the PS to just stick a needle in there and drain out what was left of the saline.  That way it wouldn't hurt any more, and also because then I could just wear my prosthetic boob on vacation, instead of looking like a lopsided freak.  Speaking of vacation- we had the car all packed and ready.  Jim and the kids were waiting outside in the van for me while I was in for my appointment.  Afterward, we were Sea World bound!!!!!  A much needed vacation for all of us!  I brought my prosthetic with me in hopes that the PS would go along with my plan.   Unfortunately he did not.  He wanted my expander to continue stretching the skin out as much as possible before surgery because it gives him more to work with. sigh....  As for the appointment- it went well- he answered all of my questions, and also took another round of pictures.  I found out that when he does the abdomen incision he actually cuts my belly button OUT OF MY BODY!!!! Then pulls the skin down to my pubic bone, sews it up, and puts my belly button in a new place.  Yep, that's some freaky shit right there!  I also asked about the stage 2 surgery- some surgeons that do DIEP flaps do lyposuction during stage 2, to kind of smooth things out and then they use that fat and do *something* to it, and then inject it into the breast with a syring- it is called fat grafting.  My surgeon doesn't do that though because he has found that often that fat will die inside the breast and he then has to go back in surgically to remove it.  I guess he just cleans up the scars, makes sure everything looks nice and even, does of lift of my real boob, and then will build me an areola out of hip skin.  That is still months away though.  The only goal for THIS surgery is to move the tissue and make it live....I will probably have 3 drains- one in my breast and 2 in my abdomen.  fun.  I will be in the hospital at least 2 days but probably closer to 4.  Maybe even 5.  Please don't let it be 5!!! I have never been locked in a hospital that long and that gives me way more anxiety than the actual surgery!   I also talked to him about pain management.  From past experience, I have found that morphine does NOTHING for my pain.  I can push that stupid button all day long and it will do nothing for me at all.  He said there were a lot of other options and he would fix me up good.  Yeah :)   The other thing I asked about was if they could use my port for my fluids/meds/anesthesia- I have no good veins and hey- the port is there, may as well use it, right?  He said they could but that as soon as I was asleep, they would probably put in IV in my arm.  Well that kind of misses the point, doesn't it?  I am nervous about them doing that when I am asleep because I can't have any needle sticks on my right arm because of lymphedema.  May as well have them do it when I am awake so I make sure they get the correct arm.
After my appointment with Dr. Duffy,  I went down to the hospital for my preop there.  They did a quick EKG, got my paperwork done, and did some bloodwork.  I tried to get them to use my port for that as well, and they couldn't (only real nurses can access a port- not techs)  anyway she looked on my only useable arm and found nothing.  I told her to just stick my hand because it is all I had.  She actually got it right away and I told her she did a good job.  As soon as I said that she said- uh oh!  And my vein blew :(  Ugh!  They ended up getting it though on the next try.  Not happy about the blown vein in my hand though.  I did find out that there is a lovely cupcake bakery downstairs in the hospital- YEEHAW!  That alone could make my hospital stay bearable.
One thing I must say that I have found strange- people feel the need to tell me they are jealous of me getting this surgery.  WHAT?  I have been told that I am getting the 'mommy makeover that all moms dream of having.  Mind you- the people telling me this mean well and I KNOW they mean well.  Trying to make me feel better about having to have surgery, I am sure but pleeeeeease don't tell me you are jealous of me.  I have cancer.  I have to have this surgery because I had to have my real boob chopped OFF because of cancer.  NOBODY  should be jealous of that.  I can blow off most things that people say to me but this just really strikes a nerve.  

Deflated

At some point friday, I noticed I was having some breast pain on my mastectomy side. I thought it was strange because I really hadn't been in much pain in that area in quite a long time. I started to worry that I had an infection or that my body was rejecting my tissues expander or something...I really had no idea! Well, there was no swelling, heat, or redness so I figured it was not an infection. Also on friday I had gone to the pool with the kids. I have searched high and low trying to find a bikini top to wear under my swim shirt.  Finally, I found one that evened out the girls.  When I wore  it friday to the pool- there was something going on for sure.  I was terribly lopsided and could not even things out.  I had no idea WHY I could not make my suit look as good as I did when I first bought it.  Then it all started to click...My foob (fake boob) was smaller!  Holy cow!  The only way to explain that is that it must be leaking.  When I finished having it expanded in December, my foob was actually a tad larger than my boob.  That was certainly no longer the case.   Jim was kind of freaking out about it and wanted me to call my plastic surgeon- the one that put my expander in.  Well, I just didn't see the point.  Not only was it a weekend, but also I had pre-op coming up on Tuesday with the plastic surgeon that was going to take the expander out (NOT the same PS that put it in) so there was just nothing for that doctor to do for me, and the expander is filled with saline which is safe if it leaks.  Now it's just something I have to wait to figure out what will happen with the leaky boob.

lymphedema

I have definately had troubles with lymphedema the past month.  Most days it is a minor annoyance, but some days it is really hard to deal with.  Especially in my underarm area.  My arm has puffed up a few times from dish drying, gardening, building stuff...I am usually able to do manual lympatic drainage to help with my arm and it seems to work relatively well.  I also have a sleeve to wear when I do anyting strenuous, and whenever I have trouble with swelling.  The underarm area though is much more difficult.  My tissue expander is in my way, so it is hard to reach that area, and I just never seem to be able to get the swelling down.  My massage therapist and lymphedema therapist both are able to get the area to drain (though the massage therapist is actually more successful)  I am really hoping that things will resolve some once I get that stupid tissue expander out.   Since I have to wear that terribly lymphedema sleeve at inopportune times, I treated myself to a designed one.  It is kind of fun, though definately more noticable.

Mammogram day

Yesterday I had my 1 year mammogram.  The week leading up went very well and I have felt pretty calm about the whole thing.  More than anything I felt the need to get it done just to make sure there was nothing questionable on my good side before surgery- because if there were, I would need to have it lopped off asap and have them both done during reconstruction.  Then yesterday morning I was a tad nervous, but I was thankful that I had plenty to keep my busy before my appointment- my weekly massage therapy appt, then I was supposed to have lunch with a friend I made in chemo, then off to my mammogram.  Well, my massage appt got canceled because power to the entire building was out, I never heard back from my chemo friend- she had been busy and forgot to check her email about our lunch appt.  Well, luckily it was tuesday and my neighborhood girls always have lunch on tuesday- so at least I could keep my mind off things while at lunch with the girls...then that got cancelled too :(  I ended up getting pretty anxious, and had a few panic attacks.   Thank goodness I had some valium in my personal drugstore.  That calmed me down nicely, though I did cry a bit in the car on the way to my appointment before it kicked in.  I called my grandma on the way there to keep myself distracted.  I talk to her in the car whenever I am going to my appointments.  She provides great distraction, plus I really try to not act freaked out when I talk to her because that would make her worry more so that further calms me. 
The valium made me pretty loopy and I ended up missing a few exits (I know exactly where to go, I have been there many times) But I finally made it to my appointment.  By then I was feeling really good and not worried at all.   My mammogram was 3d!  It was the same as a regular one, but the pictures it took were slightly different- they can view them slice by slice, like an mri image.  After that, they had me sit in the waiting room while they reviewed my images.  Then they came in and told me they needed an ultrasound.  Oh shit.  This is what happened last time it was bad.  Shit shit shit!  Well, I got back there and the doctor quickly told me that my mammo was FINE, but they just really want to make sure by doing an ultrasound.  PHEW!  She then acknowledged that this appt must be really hard for me and that I must be really nervous.  I told her that I had been in the morning but then took a valium and now all is good in the world.  She said good for you! LOL!  The ultrasound also looked perfect!  Yeah!

the road to recovery (this makes me sound like a recovering alcoholic)

I filled out some paperwork a few weeks go to get into the survivorship program.  It is at the Montcrief Cancer Institute.  It is a brand spanking new, beautiful building just a couple of blocks from the Cancer Center that I go to for treatment.  It is really wonderful- all services are available to everyone that has had cancer- regardless of where they were treated.  The survivorship program is for people that have completed treatment.  I am still doing herceptin, but it is not technically chemo, and I am done with raditation now as well.  They have a lot of services available- yoga, counseling, nutrition.  The 2 that I am most excited about are excercise and nutrition.  Each person gets 12 free sessions with a personal trainer.  Since I am having surgery in June, I would really like to start getting more fit now- I would love for my legs to look good again- that way I won't have a nice flat stomach but be flabby everywhere else!  I am also looking forward to meeting with a nutritionist.  It is so overwhelming, trying to figure out what to eat/what not to eat.  I am definately trying to eat more vegetarian meals, but I have also read some studies that say that consuming dairy can really reduce my survival rate.  Then there is the issue with sugar being bad for cancer too.  Ahhhh!  As you can see, it is very overwhelming! 
I had an appointment yesterday at Montcrief.  I thought I would be meeting with the trainer, but instead I had to meet with an oncology nurse and a social worker.  The nurse just talked to me about the various things that the survivorship program offered, and she also invited me to be part of a study about exercise and diet.  It is easy and really just consists of filling out some surveys for a year.  This will make for a total of 3 clinical studies/trials that I am a part of currently.  I feel like I may grow a tail soon because I am becoming a lab rat.  
After talking to her, I had to meet with the social worker.  She was very impressed with the way I am dealing with everything, and that I appear to be so positive.  We talked a bit about my diagnosis, and I admitted that I am really not that concerned with THIS time.  I think that I really do have cancer beat this time.  It's NEXT time that I worry about.  And really, I am quite convinced that there will be a next time.  I was 37 when diagnosed.  That means I have an awful lot of years ahead of me- so I am pretty sure it will happen agian.  I am worried about catching it in time, worried about where it will show up, worried about whether next time will do me in.  Really- those worries are all normal.  One of the biggest side effects of cancer is worry.  Worry is like an invisible tumor that eats at your brain, making you always wonder about the future and how this will all play out.   The only other issue that I have is regarding intimacy.  I haven't really talked about it with anyone, but I did discuss it a bit with Pam, the social worker.  My problem is that I have to wear clothes when my husband and I are intimate.  It is strange because I can see myself naked and I am okay with it.  Jim can see me, and that is okay- but I guess I just don't want to look down and think 'cancer' when other things are going on.  It isn't sexy or pretty.  It is ugly and that part of me is terribly deformed.  That is the one time that I just can't 'deal'  So I wear clothes.   I told Pam that I really wasn't that interested in working though it right now.  I am having surgery in June and my entire body will change all over again.  I am hoping I can be happy with it then.  We agreed that if I still have the same issues after surgery that I will come in and talk to a psychologist about it.   So there.  Now you know all my secrets and fears.  Well, the cancer related ones anyway.