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.

still chugging along, and so are my aches and pains.

I have been so busy the last month!  I have been meaning to write but I just never seem to have the time, or if I do, I am too tired.  Things are getting better!  My radiation burns are gone, I have a tan square on my chest, but it looks pretty good!  The bad news is that I do have lymphedema on my underarm area- it is called truncal lymphedema.  I also have some really terrible cording in my right arm.  It is caused by scar tissue and quite literally looks like a cord that starts under my arm and goes to my wrist.  If I stretch out my arm, you can see the cord.  It is really pretty gross.   I have been seeing a massage therapist weekly, and also a lymphedema therapist a few times a week.  The lymphedema is getting much better, and the cording is perhaps getting better- I am not sure about that yet.  It is very frustrating to continue to have things go wrong.  My energy levels are starting to get better, but I find I still tire quickly.  I am ready to do normal things but my body is not as ready as my mind, apparently.    In addition to the other issues that I have already mentioned, I still have terrible neuropathy in my feet, and really achey knees.  The neuropathy is strange.  It isn't numbness, it is pain- when I get up in the middle of the night or first thing in the morning, or even if I have my feet up and watch television for a while.  Once I stand up the pain is so terrible.  The way I can best describe it is that it feels like I am walking on shards of broken glass- that are on fire!  Once I walk around for a bit it goes away, but every time I first get up, it is just terrible.  My knees- well, they feel like 80 year old knees.  Every time I get up or sit down.  I am taking some arthritis medications but that is not helping.  My massage therapist is trying to help me with my knees and feet also- I really hope it works!  One other thing that I find frustrating is that I still have so many appointments.  I have had 4 appointments this week, just for myself!  It is so hard to know how long some appointments will take so some I have to just schedule one a day- but then my whole day is blown.  I am really trying to make an effort to double up when I can.  It makes the days with multiple appointments very rushed and stressful but it is worth it to get a day off!

This is not my arm because it is too hard to take a picture of myself like this- but basically that is what it looks like- a cord going right down the lenght of my arm.  And if you think it looks uncomfortable, you would be right!

I signed up the family to go on a camping trip with our church.  I am really quite nervous about going.  Nervous about the pain.  We have an inflatable mattress, but I don't really know if that will be good enough.  Thank goodness I have unisom and melatonin!
Now on to hair.  Let me just say that it really irks me when people say wow, your hair is really growing now, look at it, it's taking off!  NO!  it isn't!  It is NOT taking off.  These pictures are taken 4 MONTHS after chemo ended.  not 4 weeks- 4 MONTHS!  I have 1/4 inch of hair.  That's it!  I can not even brush it yet.  Well, I can, and do occastionally- just to see if it makes a difference, but it doesn't even move my hair because it is still too short.  I have been thinking of getting a Marines tshirt, to go with my marine haircut!  Oh- except that it isn't a cut at all!!!!   Okay, now that i have got my hair complaints out in the open, I will say that I am very glad to have hair finally, small as it might be.  If it is a warm day outside, I don't even wear a hat anymore.  It is so nice to be able to go out without covering my head!  yeah! 
Something funny happened today in the chemo room when I was there for my infusion.  Usually I have people not recognise me because I don't have my long bright red hair.  I understand it, but it really hurts my feelings every time it happens.  However, today at chemo on of the nurses didn't recognise be because I DO have hair! hahahahaha!  That was a really good feeling :)    I always wonder how the nurses do such a good job remembering people.  They look completely different from the first time they come in with hair, to the next time 3 weeks later- bald.  It changes a persons look so much!  I suppose normally they don't get to see many people when their hair starts actually growing back in because by then they stop coming to get chemo.

a light at the end of the tunnel

Last tuesday I had my long awaited consultation with Dr. Duffy.  He is a plastic surgeon that specializes in DIEP reconstruction.  The day before the appointent Jim and I were talking about it, and when we would try to get the surgery done.  I have talked to a few people that have said that absolutely no sooner than 6 monthsafter the end of radiation.  Well, that is the middle of September.  I am starting grad school at the end of August, so I absolutely can not schedule surgery in September.  If I were doing implants I could possibly do it towards the end of the week and have the weekend to recover, but DIEP is a very big surgery, with a long hospital stay.  At the very best I was hoping the Dr. would be willing to do surgery the first week of August.  I didn't hope for anything better than that, and really- I did not think he would go for it (especially since I burnt so badly during radiation) So, I fully expected to have to wait until Christmas break. 
Now, I *knew* that my chances for this summer were pretty much obsolete, but that did not mean that I was going to actually let myself admit that!  Much less have a conversation about the possibilities.  The only thing that has kept me going is knowing (hoping) that I would get to have surgery this summer.  Sometimes Jim is a little slow.  He brought up the topic of surgery and tried to make me admit that I knew surgery wasn't going to happen until September.  He even had the audacity to suggest that I put school off yet ANOTHER semester.   I am pretty sure that once he said this, he probably saw the smoke coming out of my ears.  It took everything in me to not hit him hard.  I told him in a very stern threatening voice that there is no way in hell school is getting put off again.  The is also no way I will concede to surgery a year from now.    NO.
But of course, the rational part of me knew that the doctor was going to disappoint me and stretch this damn neverending journey out much longer than I wanted.
So, Jim and I are at Dr. Duffy's office.  I am very nervous.  He talks to us about the procedure and how he feels I am a very good candidate, and also most of his patients only spend 2-3 days in the hospital rather than 5.  I know so much about my cancer when they are asking me questions that the doctor's nurse asks me if I am also a nurse! LOL!  Then the big moment I had been waiting for- we started discussing surgery dates.  I admitted that I know the other doctors are all telling me 6 months, but I have school, and more importantly I have a DREAM about how this all needs to play out.  I give him this whole long sob story just hoping he feels sorry for me and decides to do surgery in early August.  He said he would do it in June.  J-U-N-E!!!  Quite literally my jaw hit the ground.  And then I started to cry.  This is the first time since diagnosis that something has not only gone the way I hoped, but actually better!  much better!  Of course, then I asked if he was sure?  Is that enough time to heal?  My regular plastic surgeon said the radiated skin could do very poorly if surgery is too soon.  Nope, Dr. Duffy said that since we will be adding non radiated skin, that the surgery will be much different.  JUNE!
He then escorts us to another room and has me undress.  There is a camera in the room, and I get to pick a pair of panties from a basket.  He is going to take pictures of me.  Niiiiice.  Let me just add, these panties leave nothing to the imagination.  He makes me stand in a variety of positions and takes pictures.  This will help him plan his surgery- since he will be cutting off a huge hunk of my abdomen and putting it on my boob.  Sexy pictures they were not.
The surgery is actually 2-3 surgeries.  The first is the actual DIEP flap transplant.  Then about 3 months after that, I will have a revision and at that time, they do a lift on the other side to match, and also transplant an areola/nipple that will come from my hip, the last part I am not sure about- I think it may only be tattooing to color in the skin of the areola to make it look darker.
JUNE
JUNE
JUNE
and here is a bit of irony:  My breast biopsy was June 18 last year.  At that point, I pretty much knew it was bad news, but I didn't have it confirmed until June 20.  And now, I will have surgery to make this nightmare end on June 19.
It is early enough in the summer that I will get to enjoy swimsuit season with nice boobs and a flat tummy!

my radiation oncologist SUCKS!

I can not believe how difficult the recovery from radiation has been.  I am now 2 weeks out from the end of radiation and FINALLY I am feeling better.  I am still tired more than I think I should be- which I know is normal, but I can deal with tired.  The pain is what I had a hard time dealing with. 
Toward the end of treatment I started getting burned, but also I started to swell under my arm.  They gave me all sorts of creams to use, and it did help the burn, but nothing was helping the swelling get any better, and I realized that the swollen area is where I was having the most pain.  I dipped into my leftoever vicodin and tramadol and honestly- I was taking a hefty dose every 4 hours!  Finally last week, I called the radiation oncologist to ask for more pain meds.  Get this- they asked who had rx'd the ones I had been taking.  Well- they were left over from my mastectomy I had last summer.  He wanted me to call THAT doctor to get a refill.  What the fuck?  HE is the one that did this too me- burned me and made me all swollen.  The surgeon isn't going to refill my pills- that is INSANE!  Finally, his nurse contacted my medical oncologist and had HER refill my meds.   Yes, at least I got them filled, but seriously it is messed up that Dr. Cavey wouldn't give me an rx himself.  Jerk!  After a few more days of being heavily medicated and still not really getting any relief, I come to the conclusion that I had developed truncal lymphedema.  I guess usually people that have had lymph nodes removed get lymphedema in their arm, but instead I got it in my chest.  This explained why the swelling was still not getting any better, and also why I was in a great deal of pain.  I called my lymphedema therapist to see if she could see me and help get the swelling down.  Unfortunately she needed a new referral from my radiation oncologist.  Well- from recent events, I am betting you might know how this turns out- yep!  He did NOT send in any referral or do anything else to help me.  I called that office nearly every day last week and they basically did nothing to help me.  Throughout this whole cancer ordeal, I have been relatively upbeat and have dealt with everything pretty well.   The last month though, has been terrible.  I have been depressed, and extremely anxious, and weepy.  I know that it is because I was in pain all the time, never getting any relief from it.  And then to have the doctor basically ignore my needs just about put me over the edge. 
Last Thursday I was panicking, because I just couldn't deal with the fact that I would still be in constant pain over the upcoming weekend.  Nobody would see me or help me.  I finally thought to call my massage therapist.  He is very kind and has offered to help me ever since I was diagnosed.  I haven't had a chance to see him though because I have really been way too busy.  I wasn't sure if he would even be able to help with lymphatic drainage- luckily he did know how to do manual lymph drainage, and he was able to see me on Friday.   I was worried about the appointment because I couldn't tolerate being touched.  I couldn't even handly my clothing touching me under my arm.  For the last week I have been wearing a tank top turned inside out so that the seam wouldn't rub my skin.  By the end of my appointment, the swelling had already started to go down quite a bit!  It is now Tuesday and the swelling is completely gone.  I am so glad to not be in constant pain anymore.    Also, most of my radiated skin has peeled off and is starting to look like normal skin! yeah!

The longest 6 weeks EVER is now over!

I am so glad this day is finally here.  I know I said it before, but I will say it again- I would have gladly done another round of chemo if it would have gotten me out of radiation.  Actually- I would do 2 rounds of chemo for that!  Seriously!  I have never known that level of exhaustion.  I think I have only gone to the grocery store about 3 times in the last 6 weeks.   And that's not because I plan ahead and buy a lot of groceries at once.  We basically just didn't eat very well, and certainly didn't eat anything home cooked.  Oh well!  In the last week, I have really started to burn quite badly under my arm.  I begged for new medications.  A week ago, they did give me some aquaphor mixed with lidocaine- meant to numb the area.  It didn't.  I went back and asked for something else, but they told me the burn wasn't 'bad enough' for the next medication :(  This weekend was really rough- I ended up crying a few times because it just hurt so bad.  I then dove into my stash of 'good' pain pills, and tried to stay doped up as much as possible.  I took a picture of it but the camera just doesn't do it justice.  The dark area is much more of a purpley brown rather than just the dark red that it appears.   Today was great though- I am glad to be done, and also glad that my burn was finally bad enough that they gave me a soaking solution and some silvadine- I have heard that it is really good for healing burns!  Oh thank goodness!

  

Since it was my last day of radiation, we had a little fun.  I made brownies to take in to the staff- I topped them with florescent green frosting- *radiation brownies* !! :)  Also, since going to radiation, Ethan has mentioned a few times that I should take a spider with me and radiate it, and then bring it back to him so he could get some spiderman action going on. Well, I decided to take a plastic spider with me, but couldn't find one.  Instead, I brought a little plastic frog.  The radiation techs put it on my bolice during my treatment hehe!  Then, after my treatment I got to go up front and ring the bell, while they all cheered for me.   Of course, now that I am done with that.....I still have to go back for my herceptin treatments.  The next one is tomorrow.  I never catch much of a break, but Thursday and Friday I am really going to enjoy not going into the Center!

*Radiation Brownies*



OUCH!



This is what I did every day for the last 6 weeks!

Little frog getting radiated ;)

Ringing the bell!

All the wonderful techs that put up with my complaining ever day!

Some things just don't come quickly enough!

This is my poor head 9 weeks after my last chemo.  I have some hair on the sides but pretty much nothing on top!  Basically I have Jim's hairstyle- but it looks MUCH better on Jim!

This is what my fingernails look like.  The red discolored part is from chemo.  They are getting more grown out and as they do, they are becoming less attached, and they break and peel easily too.  It is weird and gross.  I haven't had a nail come off yet but I have felt it starting to seperate from the skin underneath.  It kinda makes me feel like I do when I hear nails on a chalkboard.  ewwww!

17 down, 12 to go!

Well, I was really hoping that my body would adjust to radiation at some point and the exhaustion would ease up, but it really hasn't.  My Saturdays are okay, and my Sundays are great though.  I cling desperately to my weekends.  There are some days during the week that I don't sleep the day away, but I still spend most of the time on the couch being still.  We have ordered out quite a lot lately because I just don't cook.  I don't go to the grocery store either, so it is pretty slim picking here at home.  Jim has had a pretty relaxed schedule at work and has been able to help me quite a bit, but starting tomorrow, he will be working the night shift and that is just going to blow our routine to hell.  I am pretty sure bowls of cereal for dinner are in our future.

The radiation itself is going well.  I have a red box burned onto my chest, but it isn't peeling yet and I keep it extremely well moisturized.   The one thing that has been a bit interesting is that I can't really wear a bra.  It rubs against the burnt area on my right side.  While going braless doesn't sound like much of an issue, it is.  If I go braless, I have to wear a jacket to cover up my lopsidedness.  Old floppy girl just looks rediculous next to fake perky girl.  Therefore, I created a one boob bra!  The Uniboober!  It holds up old floppy, but the strap around my chest goes down low, therefore it doesn't rub against any of the radiated area.  It makes my boobs *almost* level.

This is my 'uniboober' bra....for the girl that only has one boob!

It's official- radiatin sucks!

I have been so incredibly tired since radiation started.  I am usually my normal self in the mornings, but as I am driving home from my treatment around noon it takes everything in me to keep my eyes open.  I am also kind of emotional and weepy- the way little kids get when they are ready for a nap!  I haven't really been able to make much for dinner for the family because I just can't get up or get motivated enough to even thaw out any chicken.   I talked to a couple of women yesterday and they both said their first week was terrible, as far as exhaustion goes, but then it got better.  I hope so!  I know if it gets worse, I will need to recruit people to drive me there and back because it is really quite difficult to stay awake now as it is. 
To add to the fun, I hurt my shoulder about 10 days ago while painting.  I need to go to a doctor about it and maybe get a cortizone shot.  I don't really have time to go though.... I have also noticed this last week that I have at least a couple of teeth bothering me, my back is out of wack and I need to get back in to the chiropractor too.....but yea, no time for that shit.  Too busy going to radiation every flipping day, then coming home and sleeping.  Proof that when it rains, it pours.  And unfortunately it will have to rain for quite awhile because I just don't have time to deal with any of it right now.  Thank goodness my kids are healthy- they do all need haircuts though. 
And now it is time to go you know where....

Wow, what a busy week!

Wednesday was my herceptin treatment.   It went very well, but I didn't get to sit in my regular spot.  It ended up being a good thing because I sat next to a woman that was hilarious.  Normally when someones bag of chemo is empty, the computer on their little pole will start beeping.  Sometimes it is hard to know who's machine is beeping because we are all crammed in there together.  This woman and I decided they should have little lights at the top, and it could go off instead of a noise- kinda like a blue light special- but instead of a good deal, you get another bag of poison! LOL!  We then decided it should be more like disco balls, and the woman next to me even offered to do a pole dance if we could find someone to record it.  See- it's not boring at all in there!
Thursday I got to start radiation!  I went to the dressing room, got a slot with my name on it to keep my gown in, and a locker to put my valuables in.  Then I waited tyo get called in.  I had my measurements done with a CT machine, so I figured that is where I would get radiation but apparently not.  I went to another room with a machine called a Linear Accelerator.  They took more measurements, and gave me yet another tattoo (3 in total now).  The man doing the measurements also colored all over my chest with a marker.  The area inside the markings showed where to radiate.  They zapped me a few times ( I couldn't actually feel anything) then they came in and put my bolus on (that is the hard waxy plastic form they made the time before) and then they zapped me some more.  It took about 45 minutes, but they assured me that the following appointments would be much quicker.  After that, I got up and got dressed and went home.  On the way home I felt normal but I could sort of feel some weird twinges in my chest area.  By the afternoon I was exhausted.  I figured it must be from the herceptin that I had the day before.  I have heard from lots of people that radiation is easy and you don't get really tired until later in treatment.
Friday I came in for treatment again and was delighted that it only took a matter of minutes.  Jim came with me and we went shopping afterwards.  Then we went home and I napped.  It then occured to me that all through chemo, which the exception of the first treatment, I never napped!  Yea I got kind of tired and blah, but I never had to stop what I was doing and sleep!  Crap!  That means that the radiation is already kicking my ass and I still have 5 more weeks of daily treatments!  This is kind of upsetting to me because I really had planned on doing some stuff over the next month.  Nevermind, I guess!
Other than complete exhaustion, my skin is getting kind of pink.  It isn't really burnt, but it is tender.  I alternate lubing it up with a special lotion from the oncology center, and aquaphor.  Aquaphor is a pain in the ass though, because it is very greasy.  I ended up cutting up an old shirt and after I grease myself down, I put the tshirt scraps on, then put a stretchy bra on over it all.  I do this about 4 times a day, and  while it is a pain- I am hoping my diligence will pay off and my skin won't burn very badly.  I will do ANYTHING to be able to get my reconstruction surgery done in early summer!  I don't want anything to mess it up.

Got bored and took some pictures of myself

Happy days do happen sometimes!



My and my girl



At Breakfast with Mom day at school with Cam

Thanksgiving feast with Sloane

First herceptin only treatment! (no more yucky chemo!)

Wearing the best wig ever that my neice made for me :)  Who wouldn't want to wear a rainbow on their head?

The date was great!

I went to the Cancer Center to meet 'Jane'.  I had no idea what she looked like, but I knew she was done with chemo, so she had some hair, and I knew she was about 60yrs old.  I tell ya- it was much like a blind date.  I sat in the waiting room looking at people, waiting for someone that fit that description.  I finally found a woman and asked her name- she was the one I was looking for!  When I first got there, I saw Fred the nurse in the lobby.  I told her that I was meeting 'Jane' so I could see her boobs, and that we would be borrowing an exam room.  She kind of looked at me strange, then smiled really big and said sure- I will give you guys a room!  Yeah!  So, when I finally found Jane in the waiting room, I just took her back to the rooms and found Fred- she led us to an empty room.    All I can say about the experience is WOW!  It was amazing!  Seriously!  She showed me, and I could not stop staring.  It looked so real and so natural.  She had a scar underneat her boob, in the crease but I couldn't see any other scar.  It was smooshy and floppy and great!  I just kept staring and saying "wow, that is such a great boob!"  She has gone through her second surgery for it- stage 2.  That is where they build her nipple and areola.  Instead of just having her areola tattooed on, she actually had a skin graft from her hip made into the areola.  She is still waiting to get the tattooing done, which will just add color.  If I didn't know better,I would never guess that she had a mastectomy- it looked so real and natural.  I knew after seeing it, that absolutely this was the right thing for me to do!  I might get something out of this that looks real- not something out of a horror movie or freak show, like I have now.  I am so excited!  Jane told me that I can call her anytime if I have questions.  She also told me that she is pretty sure that Dr. Duffy won't wait very long to do the surgery.  Of course it all depends on how my skin reacts to radiation but at least there is a possibility that I will have the surgery before summer or maybe early summer.  It would be kind of nice to go into summer with a completely flat stomach and a nearly matching set of boobs!!  I really am glad that I met with her- I feel so much more positive about the outcome of this whole ordeal, as well as just feeling like this next year won't completely suck!
And now, I am off to the plastic surgeons office to discuss radiation and my plans for the future- which unfortunately do not include him, since I am certain about DIEP now.  This will be my first of 4 doctor appointments this week.  I only have Tuesday off- good grief!

Getting ready for my date!~

Today is the big day.  I get to meet the 'booby lady'!  I will call her Jane :)  Jane has her oncology appointment today and I asked if I could meet her there so that I can see her boobs!  I am so excited!!! I basically get to make it to second base on our first (and probably only) date!  I feel like I should be practicing my lines- hey baby, rip off your shirt and let me see whatcha got under there!  Now lay down on the exam table and let me feel em....
Yes, it really seems quite weird to be meeting someone just so I can see her boobs.  I am very excited though!  I really feel very good about the DIEP flap procedure after talking to Jane on the phone, and I feel like seeing them will really make me feel that this is exactly the direction I want to take.  She says that she is very happy with them and that they are very much like her originals- just newer.
I thought about taking pictures, but I think that is probably crossing the line! haha!  I have seen plenty of pictures of DIEP boobs online anyhow- it's the seeing them in person, and feeling them, and seeing how they perform in different situations that I can't see from a photo online.  Yes- I want to see how they perform.  Mainly- just how they move- is it natural?  When she lays down do they lay down too, or do they just sit there, all creepy like, just like barbie? 
Wish me luck!

Don't come to my house on a full moon!

I never imagined going from being a person with a normal amount of hair to bald but even more terrible and disgusting is the though t of going from bald, hairless, or nearly hairless everywhere to becoming a wolf or perhaps a bigfoot.  Well my friends, sadly that is what is happening here.  Yesterday while looking in the mirror to see if I had any new hair growth I was horrified to find that I did indeed have hair growth.  Little black hairs in fact.  On my FACE!!!! No I don't mean a moustache, or thicker eyebrows.  I mean right in the middle of my forehead, as well as on my cheeks; in places men don't even get hair!  What the hell?????  I have since plucked about 15 of these evil suckers out.  Jim believes that on a full moon I will turn full wolf.  Great!  How in the world did this happen.  How could my hairs get so confused that they start grown in the wrong places?????

I am pretty sure this is my future.

Radiation prep

On January 17th, I had my CT scan for radiation.  This scan is used to measure everything so they can callibrate the machine correctly for radiation- basically so they can fry me in all the right places.  The woman that was working with me happened to have a 12 year old son, and they live in Joshua.  Small world!  They had to ma ke a form of my right breast/chest area.  They did this by laying some very warm pliable plastic over my chest.  It felt very much like paraffin wax.  They then put ice packs on top of the warm plastic to harden it, since it was now the shave of my chest.  All the while I had to keep my head to the side and hold my hands over my head while holding some handle bars.  After about 5 minutes of this, it felt like my arms were going to fall off, but I couldn't move them because it would mess up the plastic form.  After the form was all set  up, they sent me through the CT machine a few times.  After that, they took the form off of me and gave me 2 very tiny permanant tattoos: one between my boobs and one just under my right armpit.  Then I was free to get dressed.  They then came out and gave me my schedule- 11:10 every day starting the first of february, and continuing for 5.5 weeks.

Here is a picture of one of my tattoos!  Pretty tiny huh! 

the unscannable lump

I must admit, I was quite nervous going back to the hospital where I was originally diagnosed with cancer.   I knew the people there were very kind but gosh, they sure didn't give me good news!  I had braced myself for the worst though- I was ready this time!
I parked in the garage. The garage was pretty full so I had to drive around until someone left, so that I could take their spot.  The entire top level was blocked off because it had snowed the night before and was pretty icy on the uncovered portion of the garage.  I finally got a spot and went to the elevator.  I noticed it had a sign saying  that if you wanted to go to the tunnel, then go to the level below ground.  AWEMOME!  I didn't know there was a tunnel!  And considering it was slick and icey and cold, an indoor tunnel sounded like a great option!  It was a nice little walk, with photography all over the walls and music piped into the speakers.  I finally get up to the registration desk, check in, then go back for my ultrasound.  I was disappointed that it wasn't the same doctor doing the ultrasound that had done the original one.  The new doctor was very nice though.  She easily found my lump with her fingers, but could not pick it up on the ultrasound.  I ended up being there for a very long time while she poked and prodded- trying her best to find that lump on the ultrasound.  She never did find it.  She ended up telling me that it was most likely a lymph node that was slightly swollen from illness or whatever, but that it was just fulled with normal fatty tissue, therefore it was blending in with the rest of the fatty tissue in that area.  If there were a tumor or any abnormal growths then it would stand out on the machine.   Well, that's good news!

Unhappy birthday to me

11 years ago today, I was about 6 weeks pregnant with our second child.  I had my first OB appt with my very wonderful obstetrician that I had known for years.  She noticed on the chart that it was my birthday.  Normally they didn't do ultrasounds so early, especially since I was sure of my dates, but she snuck me in to give me a birthday surprise.  Surprise is right- that is the day I found out that the baby was not alive.  That was just the beginning of a downward spiral related to pregnancy, loss, and infertility- but it all started on my birthday.   Since then, I have kind of felt like my birthday was somewhat tainted.  You would think I would know better than to have a doctors appointment on my birthday! 
My appointment wasn't ALL bad.  The radiation doctor was very nice (and pretty cute too!), and he gave me some good news- only 5 1/2 weeks of radiation!  He did say that it will for sure cause some lung damage but hopefully it won't cause any problems (ugh!).  I will see him once a week during treatment.  I have to come back on Thursday to get a CT scan so they can make a mold of my boob so they can know exactly where to target the radiation beams.
Since I was there, I popped over to see Fred- Dr. Young's nurse.  I told her about the lump I found, so she went to find a doctor that could examine me.  One of the nurse practicioners came in and did the exam.  She found the lump and told me (while she was calmly but clearly freaking out a little) that it was probably just a swollen lymph node, but that we had to get it checked on ASAP.  I also have a strange rash that appeared in the last couple of days- it is on my foob, just on the bottom half under the scar.  It is not raised or itchy- it just looks like tons of tiny broken blood vessels, but it's not.  The nurse was somewhat concerned about that also.  Yeah! 
So, now I am waiting on a call from the oncologists office.  I will have to go into the hospital tomorrow (same place I had my original mammogram and biopsy) so that they can do more tests.

I am pretty sure I will make sure to NOT go to any doctors on my birthday ever again!

Happy Birthday to me

Well, so far- things aren't great.  Not terrible, but definately not great.  We went out last night to celebrate my birthday- we went to PF Changs, and the kids were actually pretty well behaved.  I totally didn't pay attention while ordering food and EVERYTHING we ordered was EXTRA spicy!  Holy crap!  I went through 4 lemonades in about 10 minutes.  Good food, but man- I really need to pay attention next time! 
On the drive home my hips were starting to ache- I knew I had done to much for the day.  When we got home I went to the bathroom and got stuck on the toilet!!! No- I didn't fall in and get stuck- I just could NOT stand up.  I yelled for help but nobody came.  I had to sit there for a good few minutes before I could muster up the strength to make myself stand up.   Then, I decided to take a bath- it was great until I tried to get out.  Yep- stuck again!  After yelling for a few minutes, Jim came to help me.  He tried to just give me an arm to pull up on but I was not able to use my legs at all.  He actually had to lean in and put his arms around my body and stand my all the way up!  It's really nice to feel like an invalid the night before your birthday!  After that I was fine- just shuffling around the house as usual in the evenings.  I am just glad Jim was there last night- if he would have been gone to work over night I really have no idea what I would have done.  
Today I get to meet my radiation oncologist.  At least I have come to terms with getting radiation.  I am really not too worried about it.  I have a couple of good friends; Debra and Robert,  that work in the radiation field, and they have talked to me many times and made me feel much better about this.    Robert actually works with the radiation oncologist that I am seeing today.  I love that I have friends in 'high' places!  While I am there, I need to talk to one of Dr. Robin's nurses because I have found a lump :(  It's on the foob side, but not where the expander is- it is sort of below my armpit- it's definately a lump and it is painful too.  ugh!  It may just be scar tissue from the surgeon digging out my lymph nodes but I need to make sure it's just that- I haven't noticed it, until this week.   I thought of waiting till my next Oncology appt, but that isn't for 2 1/2 more weeks.

First non chemo infusion!

Well, Wednesday I went in for my first Herceptin + Pertuzemab/placebo infusion.  I have been repetedly told that this will be nothing like chemo, and will be a piece of cake.  Herceptin can cause some flu-like aches and pains and that's about it. First of all- you can't say something will be flu-like and also say it's a piece of cake- the two ideas do NOT go together.  I should have realized this right from the start.     I have seen people in the chemo room getting just Herceptin.  They are in and out of their chair in 30 minutes.  No- I am not that lucky.  I am doing the drug trial for Pertuzemab so it is much longer- 30 minutes for Herceptin, 30 minutes waiting, 30 minutes Pertuzemab (or placebo), then 60 minutes waiting....2.5 hours!  I haven't been too inconvenienced by being on a drug trial until now.  Now it is very hard to sit and wait an additional 2 hours for what may be the placebo.    Oh well- at least I like the people there!
While I was at my appointment with Dr. Young, I was asking her opinion on Diep flaps- and how she thought they looked, and if the women were happy with their tummy boobs ;)  She gave me some good information, then told me that she has a patient that would probably be happy to meet with me to answer my questions and let me see her boobs!  How awesome is it, that my doctor is setting me up with a woman so I can 'feel her up'!!!  I am very excited about this.  I have spent hours on the internet looking at various boob procedures and the end results, but I cant feel them or see how they actually 'perform' in different situations.   Yes, I know as you are reading this, it sounds rediculous.  Unless you have had a boob removed, you have just never had to face all these crazy questions! 
I have since talked to this woman and we have made a 'date' at the oncologists office during her next appointment.  She is very happy with the surgery and the surgeon that did the procedure.  Her surgery was last April, so there has been plenty of time for her to heal, which is nice because I will see something closer to the 'end' result.  I am more sure now, that this is the right procedure for me. 
As for the herceptin- Oy!    I felt great the day of infusion!  It was nice not having to take steroids or any premeds.  I just felt normal!  Thursday was the first day I had some extra time to myself, so I decided to get some much needed errands done.  I had a trip to Toys R Us, which went fine.  Then I went to Costco- about 1/3 of the way through I was holding back tears.  I wanted to just lay down and cry because I was SOOO tired!  I still had more shopping to do!  Ack!  I decided to scrap the grocery store trip and just grab something at Costco for dinner.  I barely was able to finish that trip.  Friday I was still tired, and had a little more pain than on a normal day but nothing terrible.  By friday night though my legs were having a lot of problems.  Usually on the Saturday after chemo I kind of do this shuffle walk thing.  I can't walk normally- I am stiff and my legs hurt and just don't work the way they should- so I take teeny tiny steps (think Morticia Addams in her teeny tiny, tight at the bottom dresses- except way less sexy)  I was really thinking that was a chemo thing- nope, it was Herceptin!  bah!   I have also had heartburn- and I did not have that the week leading up to my infusion.  It also feels like I have fluid in my ears again- not nearly as bad as I would during chemo but definately something I don't feel when I am 'normal'.  Today is sunday, and my legs are starting to feel better but they are still weak and painful- I imagine it will be worse tonight- it's always worse at night. 
The good part- no more icing my fingers, no more tasts changes, no more steroids, no more nausea!  Which leaves me with pain, legs not working right, heartburn, clogged ears, and risidual eye watering, twitching, and muscle pain in my arms and legs.  They don't consider it chemo but I still have all those side effects AND have to sit in that damn chair for 2.5 hours every 3 weeks.  I will call it Chemo Lite!  I can not wait for September to come so it can be over and done with!