boob decisions

Since my last appointment with the plasic surgeon I have been thinking a lot about what I want to do with my fake boob (foob).   I hate my tissue expander.  I HATE it.  The last fill I had made it even worse.  I now have broken blood vessels across my skin because it is pulled so tight.  It is also now causing some nerve pain in my arm and all across my chest is just really uncomfortable.  I thought, when I first started all of this, that the idea of an implant would grow on me.  That after having the tissue expander in, I would become okay with the idea of having weird fake shit inside of me.  It hasn't happened yet.  I know that it will be very different from what I have now- but I want to be able to lay on my stomach without it feeling weird, and I don't really want to look like Barbie.  I am sure Jim would like Barbie- but I just don't feel the same way.  If I have an implant, then my other side will not only need a lift- it would probably also need a small implant just so that they look similar.  I hate the idea of that!
I decided to look at all my options again, and I keep coming back to the DIEP.  It is a procedure that uses tummy fat and tissue.  It is a huge operation, with a long painful recovery, and my plastic surgeon does not perform this procedure.  So- it really is a huge pain to change my mind.  It will change a lot of things. 
There are not very many doctors at all that perform this procedure because it is very complicated and time consuming.  At first, when I was looking for more information, I found a very good practice that performs the DIEP in San Antonio but that is a long drive!  I did finally find a few doctors in Dallas that do this, so while it isn't as close as Fort Worth- it is much closer than San Antonio. 
I had an appointment with my plastic surgeon yesterday.  I was supposed to get my last fill.  I was very nervous about going because I knew I needed to talk to him about wanting the DIEP, and I was afraid that he would say it wasn't a good idea for me to have this procedure, and that we would part on bad terms.  Thankfully he is a much better doctor than that.  He said that he knows doctors in Dallas that do only this kind of procedure, so they are very practiced- and he would be happy to refer me to them- he also looked at my (ample) stomach, and said I would be a very good candidate for the DIEP.  I was so happy that he was okay with me at least looking into that as an option.  He wants to see me again in a month to find out what the radiation doctor has decided- and then I guess we will go from there! 

Who needs an immune system anyway?

The weekend went REALLY well!  I didn't have any neausea other than the first day really, which is a huge indicator of how the weekend will go, I have found!  Jim's brother and his wife came out for the weekend- they were worried about me not feeling up to visitors but it worked out great!  Saturday was my bad day, as usual but it wasn't terrible.  This cycle was much more like the first 3- and I still seemed to have a decent amount of energy every once in awhile.  I was really amazed at how well it went. 
By the time Christmas came I was doing pretty good!  Of course by then nothing tasted good so all that candy in my stocking will have to wait around for a while before I can actually stand to eat it!
Wednesday I went in for my labwork.  I really figured it would be great because I was feeling so good.  Not so lucky!  The nurse actually asked me if I had even taken my Neulasta shot the day after chemo!  I had, of course!  Apparently I have no immune system.  It was by far the lowest that it has ever been.  Surprisingly she didn't tell me to stay at home or wear a mask or anything- just be careful, wash my hands a LOT, and take my temperature 2x a day- and call immediately if I have a fever. 
Well, that was on Wednesday and it is now Saturday.  I think I am starting to come down with another cold, but I have no fever and by now my counts should be starting to rise again, so I am probably out of the woods.  I am really tired of getting sick EVERY SINGLE CYCLE though....
Today we are taking Jim's mom to the airport so she can go home.  It was really nice having her here.   She has made so many cookies while she has been here-  I told her last night after she made a new batch that I was going to send her the bill when I start going back to Weight Watchers! hahaaha!

more appointments- see, it never ends!

The day after my chemo, I have an appointment with my thyroid dr.  I have not seen him since I was diagnosed.  I feel kind of weird going in there because I am pretty close to him and I know it will upset him to see me sick.  He always asks about my kids and tells me about his.  He is always very good to refer me to doctors that he would be comfortable sending himself or his wife to- he just always looks out for me.  So, I tell him about the breast cancer thing and that radiation is most likely coming up, he was very concerned about that.  Radiation can actually cause other types of cancers.  I knew this but being reminded of it made me kind of nervous.  One type is thyroid cancer- not really a big deal- if you have to get cancer- thyroid is the way to go!  I had a scare with that over a year ago I told him at this appointment that I sure did wish that I had just ended up with thyroid cancer instead because that would have been so much easier!  He encouraged me to see a radiation oncologist that he knows for a second opinion. I am not sure I will do it or not though-I think I will be okay with what they other radiation dr recommends, especially since it HAD started to spread when they did the mastectomy.    As for the thyroid part of my appointment- all the questions he normally asks me, he couldn't because chemo makes your body all messed up (like hot flashes, tired, etc)!  haha!  So, I made an appointment to see him again in 6 months.
Thursday evening, my friend Janice decided to bring by some gingerbread cupcakes- they had maple frosting.  WOW!!!!! They were so good.  And I was so glad that I got them on a day that I could actually eat cakey stuff :)
Friday was a busy day.  Cameron had his Christmas party at school.  I told him I would come because I haven't been to anything at the school all year long.  I knew I was pushing it though because friday is the day I start feeling 'off'.  I was able to help some, and get a few pictures.  His teacher was really glad to see me there- she knew about my 'situation' and she sends notes home with Cameron occasionally, wondering how I am doing- so it made her happy to see me doing well.  While I was there, I went to the lost and found to make sure we weren't missing anything.  The lost and found is scary and germy.  I try not to take any breaths, certain that I will catch some sort of infection.  I don't find anything that is ours- so I then slather up with a hefty dose of hand sanitizer that I brought with me just for this purpose! 
Then, I had to show up at the clinic to get my fluids.  Jim came with me, since it was only supposed to last an hour.  He was bored out of his mind- and we were only there an hour! I got a chuckle out of that.    The time went by quickly and we were able to leave.  No more appointments till after Christmas! yeah!

Final chemo (kinda)

We invited Jim's mom to come out and stay with us for my final chemo.  My chemo was scheduled for Jim's birthday and I would still not be feeling my best for Christmas so we figured some extra help would be nice.  Turns out that Jim was able to get most of those days off but that was nice to be able to spend it with his mom and to have her here for Christmas.  And the kids made out great on this deal because she loves to bake cookies!!!
In the morning, I did my usual stuff to get ready.  We had grabbed a bag of Sonic ice the night before so I didn't need to go there on my way to chemo like I usually do.  I just had to put it in some ziplock bags so that I could use it later to ice my hands during the Taxotere.  I am very happy that this will be the last time I will have to ice my hands.   So I leave the house with my huge overnight bag packed with things I never really use there.  I stop at McDonalds because I LOVE their oatmeal.  I get an oatmeal and a yogurt parfait- this will get me through until lunch. 
I wasn't quite as scared of this chemo as I thought I would be- especially considering how bad #5 was.  I went in on the 19th, and got my bloodwork, then downstairs to see Helaina- the NP.  I talked to her about how terrible #5 was and she was really worried about it, partially because if I got sick everyone was going to be out for Christmas break so I would have to go to the ER.  She decided that I needed to come in on friday- 2 days after chemo, to get a big bag of fluids.  Then she was worried I would not follow up, so she made an appointment for me to show up on friday, so that I couldn't back out.   After that, I went back upstairs to the chemo room and got hooked up.  No tv today- just a bunch of staring at each other.  A lot of people were sleeping.  I wish I could sleep but I never can in there, even with the benadryl they give me.  I think that the steroids that they also give me fight for attention too so I feel drowsy but can't really sleep and end up just feeling pretty drunk for about an hour.  There was a  family seated next to me wrapping stocking stuffers for Christmas.  They were relatively entertaining, and they gave me m&m's!  The infusion actually went pretty quickly and I got out of there before 4- which is really amazing!  Before I left, one of the nurses brought over a tshirt that was signed by the 4 nurses working that day (usually there are a bunch more but some were sick or gone on vacation) and a pin, because it was my last chemo!  I barely held it together until I got to the car- then I started to cry.  Of course, I had taken Jim's car that day and he does not keep tissues in his car- damn him!
Once I got home, Carole had made a birthday cake for Jim.  Food still tasted good, so it was nice to have some cake.  It was also pretty warm outside, so Jim grilled some steak for dinner.  It was great!

Almost done filling my Foob!

I had an appointment this week with my plastic surgeon.  He did another fill- 50cc's- same as always.  This time though, you can tell it is getting close to full, if it isn't already too full!  My skin is so tight that it's shiny, and I even ended up with a few broken blood vessels. And really- this tissue expander has always looked pretty freaky and hideous, but now- it is just plain disgusting looking.  It is so big and oddly placed that is just...there really are no words to say how terrible it is.  It fills into my armpit and it is SO high up and now perfectly round.  The doctor plans on doing one more fill but honestly I don't know if it's possible!  And it is so tight and uncomfortable now that I can't imagine it being bigger and how much worse that will feel. 
I did come up with something though that makes me feel somewhat hopeful for the spring.  Since I was originally planning on getting my final implant at that time and now I can't because of radiation I have really been bummed.  But I was thinking about the other side- the good  girl ;)   I will have to at the very least get a lift on that side to make it somewhat like the other.  I have no idea what I really want though.  I don't think I want an more work than that done, but what if I do.  I really don't want them any bigger but I am not sure what lifting it will do.  So- this is the plan that I am going to ask the plastic surgeon about next time:   Getting a lift on my left side in the spring right after radiation is done.  Then just leaving them both alone for the next 6 months.  This way- I maybe won't look QUITE as rediculous this summer, with one huge one up high, and one smaller saggier one way down low...There is no way I would wear a tank top or a swimsuit with the way things are right now.  Maybe not even later, but at least they would be on the same level and that would make me feel quite a bit better.  Then I can get used to what the lift looks like, and decide if I want more or not.  Then if I do, I can have a revision done at the end of the 6 months when I get my right side fixed.  
All it does is add 1 more surgery to my year- I don't care, I will already max out my insurance again anyhow, and shit- who cares about 1 more surgery, and one more time being put under.  I am a lab rat anyhow, this is my life, and what my life will probably always be like to some extent.  And I think this will really give me a better chance at deciding what I would like as far as my boobs go.  Now I just need the plastic surgeon to agree to it!

It finally happened

You know that picture you have in your head when you think 'cancer patient'?  You know, the bald sickly person laying in bed- barely moving, not eating, just lying there....Well that was me after this last cycle.  It was by far the worst one yet.  The nausea was way worse and lasted a lot longer than before.  I still never puked, but boy I sure did wish I would have!  My stomach hurt so bad, and everything I ate or drank just made it worse- so I stopped eating and drinking for 3 days.  I had a few tiny sips of water here and there but even that was really hard to do.  Of course, by Sunday night I realized that I probably should have called my Dr and gone in for some fluids, but when you are in the middle of feeling like shit, you just don't think logically sometimes!  Even Monday I didn't feel well but I was able to drink enough to get hydrated again.  Now, the upside to this is that I lost 7 pounds!   I wouldn't recommend that method though!  It was really terrible- I laid on the couch all.day.long. for the entire weekend. 
Finally, when I emerged from being nearly dead, I decided to catch a cold.  Again.  Ugh!  So, I have no spent the last 5 days with a stuffy nose, a terrible cough, and no voice!   Every once in awhile I can talk but not often.
While I was at my last chemo appointment, the doctor gave me an RX for Lyrica.  She thought it might help with my muscle fatige issue because it might somehow be a neuropathy thing, and Lyrica can help with neuropathy.  Every night that I took it, I would wake up in the night to use the bathroom, and I could barely walk- I was so doped up- it was similar to having about 6 drinks in me!  Yikes!  I weaved my way all over the room before I made it to the bathroom.  I also kind of wonder if the Lyrica is part of what made me so very tired after chemo.  All I know is that I had to stop using it and I refuse to try it again- just in case that is part of what made me feel so sick.
I had started to get excited about my final treatment coming up. It is a very exciting thing in the chemo room when someone finishes their last treatment.  Well, yes- my last 'bad' chemo is coming up on the 19th, but then guess what?  I still come back every 3 weeks until the end of August- so it's not like it is any big deal about December.  It doesn't change my schedule.  My ass still belongs to my oncologist.  I still have no freedom.  My treatments will be shorter, sure- instead of 6 hours it will be 2-3.  Big deal- that's still a big whopping amount of time I have to be at that god forsaken place.   I guess that kind of goes along with everythign I am feeling right now.  I am definately in a kind of dark place.  I had a fleeting thought of celebrating my last chemo (maybe the day before- while I still feel good) but why really?  My last day isn't really until August.  And I know it will get better after this next one but still- I am really feeling sorry for myself.  I am tired of being bald.  Tired of being ugly.  Say what you want- I feel ugly.  I feel like I look like an old man.  It takes SO long to get ready now.  So much planning ahead to decide what top goes with what scarf, bla bla bla.  Then I have to put a lot of makeup on to make my dry scaly face look tolerable and to put enough eyeliner on to cover up the fact that I have patches of eyelashes missing.  And I am just SO tired of not having any damn hair!  

I don't wanna go!

Day after tomorrow I 'get' to go do chemo again.  I have finally hit a wall- I am no longer feeling upbeat about this and I just don't want to go.  It doesn't help that starting tomorrow I have to take my mega dose of steroids again for 3 days- that shit makes me crazy and hot and I don't sleep well.  I have decided that along with all the other 100 drugs they have me on, they should add valium daily for about 5 days before chemo, that way that terrible anxiety and fear that lurks will be less scary.  I know I really haven't had a bad go of it.  I haven't puked and I don't lay in bed all day, but still- I hate chemo.  I hate the way it makes me feel, I hate the way it makes me smell as it leaches out of my system, I hate how sore it makes me, and I also really hate that all my side effects seem to be getting a little worse each time.  I am still twitching- mostly just on my face, and not nearly as terrible as I was 2 weeks ago, but it's still there.  Also my muscle weakness is getting worse by the day.  Most of my side effects get really bad, then start to get better before my next round- this muscle thing just gets worse.  My legs feel wobbly and heavy.  I can hardly bend down to pick something up that is on the floor, and if I do bend down it hurts like crazy and is so difficult to stand back up.  It started happening in my right arm also- it feels like I pulled a muscle, but I know that I didn't.  Now my left arm is starting to act up too.  Jim and I were talking about this and we are wondering if a wheelchair might actually be in my future.  Seriously.   I am honestly terrified that this might really happen.  I have been asking around in my circle of cancer people, about their experience with this and it seems that often it gets progressively worse until after chemo and in a matter of weeks after their last treatment it gets much better, and others have problems for as long as a year- with simple things like going up and down stairs, walking quickly, and running.   A YEAR!  I would really feel better if I could KNOW this would get better in January.  I would love to just stretch.  Such a simple pleasure that has been ripped from me.  Sure- I could stretch but I am in total agony afterward. 
On the upside- one of the common side effects of my chemo is neuropathy.  Many people I know have little to no feeling in their fingers and toes- luckily I do not have any issues with that- other than just a mild tingling and some clumbsiness for about a week after chemo.  Also- my hair is kind of growing back in.  A few of the hairs, anyway! LOL!  And they don't seem to be falling out either- I will have to see if this continues, or if the next round makes me shed again.  It 'sounds' nice, but really it looks TERRIBLE.  Being completely bald looks much better than this weird sparse stubble that  have going on.


Here is my lovely hairy head!

It has been reported that the breast cancer rate would be cut in half if women would eat a low-fat diet. Now, if a woman has already lost half her breasts, can she go back to square one and eat a high-fat diet?

I am feeling pretty good this week!  Jim had a few days off, so we all got to spend a little time with him finally, the housekeeper came so our house is clean again, and now the kids are off for Thanksgiving break.  Ethan asked my yesterday if I was going to have chemo this week.  He was really concerned that I might have to and then wouldn't want any thanksgiving food! LOL!  The reality is eh, most of it really won't taste good anyway- even if it is my 'good' week.  While I can't wait for this to be over and my taste to return to normal, I also really hope my aversion to bread/cake stuff sticks with me.  I could really do with less of that in my diet. 
Jim and I have talked about diet changes and I think we are both going to try to make some serious changes- I think we are going to try to have a mostly vegetarian diet.  I have done this before and it was a breeze, but that was before kids!  Now I have 3 picky eaters so I am not sure how to make that work exactly!  Of course they are like their mom in their way of thinking- they don't really agree with keeping animals in terrible conditions, and killing them, just for us to eat.  That being said- they aren't very keen on vegetables other than green beans and corn.   The other dietary change I would like to make is a low sugar diet- but without using artificial sweeteners, I honestly don't know how to do that.  Avoiding sugary foods isn't really an option!    I have some time to figure it all out- I am really not making myself avoid much of anything while doing chemo- I don't have the energy for it.  If it sounds good- I am eating it! 
I think we are planning on going to visit Jim's dad for Thanksgiving.   We will stay in Tulsa for a couple of days, then come back home.  It will be really nice to get away.  I don't think I will have any problems- the only side effects I am having is twitching, mild heartburn, and terrible, terrible muscle weakness.  None of it really keeps my from going or doing- except I can hardly bend down and I have to lie straight while in bed.  It is very weird and I do not understand it at all.  hot soaks in the tub, light stretching, short walks- none of it helps!  I guess I will feel better in January as far as that goes!
Oh- and I a get to go to the plastic surgeon for another fill tomorrow.  I am starting to have a decent size fake boob.   I don't need to use a prosthesis in my bra anymore- but the bottom half of my bra is basically empty.  I hope that part starts to even out but I kind of doubt that it will.  Soon my fake boob is going to be a lot bigger than my real boob.  That is going to be weird.  It's big enough and hard enough that I could start using it as a shelf if I run out of space elsewhere to place things.

This week was a real humdinger!

My chemo infusion went great and ended in almost record time!  In addition to that awesomeness, the tv was NOT set to watch Bonanza! haha!  I sat with a bunch of really talkative women and actually had a pretty good and entertaining time.  The first woman I talked to had lung cancer- she just finished radiation, and her lungs and throad got all torn up from it- she was in pretty rough shape.  I ate a breakfast sandwich and she almost cried because she wanted real food so bad.  She only stayed for about 2 hours- then my usual group came in- turns out that 2 of the women in my pod lived in Joshua- we probably all live about 5 minutes from each other!  Pretty weird!  After chemo I was feeling a little queasy- but not terrible.
Thursday, Cameron went to school, and the nurse called shortly thereafter because he was throwing up :(  I went and picked him up and sent him upstairs to watch tv-  I told him I couldn't clean up his mess so he had better puke in the toilet! haha!  Luckily he did!  Then Thursday night, Ethan started with the puking.  Jim was also not feeling well. I missed the bug when Sloane had it- now it was going through the rest of the family.
All day friday I felt pretty bad.  I actually don't think I caught the bug- I never got a fever, but I think each chemo is getting worse and worse.  All I can say is that friday and saturday were terrible!  And since Jim wasn't feeling well- that meant I got to take care of the family.  I got to make dinner for everyone, and do everything else. Ugh!  MAYBE next cycle someone will take care of ME, and cook for ME.  That would be nice!
Sunday night I woke up a few times in my sleep because I was having some weird arm pain in my left arm.  I was also really nauseous, and noticed a weird aching pain in the area of my heart.  I kept going back to sleep, but by morning I had gotten kind of concerned.  One of the chemo meds I am taking has a history of causing heart problems and heart attacks.  I decided I would go in to the dr if it was still going on once Sloane went to school.  And of course- it was!   Jim drove her to school, then came and picked me up- luckily we have a little ER  about 2 blocks from our house.  I found out that if you want people to spring to action- you tell them you are having chest pain.  Haha!  Seriously- I didn't have to sign any paperwork, give them my name, nothing- they took me straight back to a room and put me in a bed, brought in an EKG machine and got that all started.  Then they took my name and personal information.  Impressive!  Sadly, after that it went very slowly.  They needed bloodwork and they were out of the needles they use to access my port.  That meant they needed to stick my arm- My right arm is out of commission forever more so they get my left.  The woman does a terrible job in my arm, then sticks it in my hand- usually it isn't terribly painful but this woman was not skilled at needle sticks!  She ended up having to go get someone else to do it because although she got a vein in my hand, she couldn't pull any blood from it.  The other woman did a fabulous job, thank goodness.  They then decided that I needed a CT scan/echo something or other.  They had to inject me with iodine at a really fast pace and take a CT picture of my heart at this exact moment.  Sounds easy.... The woman has to test my iv to make sure it can handle the fluid coming in at a fast pace, so she tests it with saline.  They left my hand iv accessed (even though it wasn't suitable enough to draw blood from)  so that is the one she used.  When she pushed it into my vein, I SCREAMED!!!!  I do not mean a little- ouch, that doesn't feel good yelp- I mean screamed!  It was so incredibly painful.  She thought she had blown a vein but she didn't.  Who knows what was wrong.  She decided there was no way we were going to use my hand.  She called in someone else to stick me AGAIN.  They actually had to use an ultrasound to find a vein to stick!  OMG- I am seriously considering getting a needle that can access my port, and keep it in my purse at all times just in case of emergency because this was such a terrible experience!  
Finally they got the needle in, and gave me the injection- it all went fine!   I ended up being there for 4 hours which totally sucked!   During all of this, I was still experiencing the chest pain, but all the tests came back fine.  Even once I got home in the evening I was still having that pain- so although it totally ruined my whole morning, I still would have gone to get it checked out if I had to do it over again- it really was a bad/odd feeling when it would happen.  The doctor even said that it really sounded like heart pain that I was describing.  Often people have pain that they think is a heart attack and it is really heartburn, but that is definately not what I felt.  I guess it was just a weird fluke!  Thank goodness for that!
Today, I feel like I am almost normal.  It's about time!  The only side effect I am still having that is really bothering me is twitching.  All of my muscles twitch so much I feel like I am vibrating!  Sometimes, it is my arms, sometimes it is my face, and even my stomach- so weird!  The nurse last week told me to drink tonic water, because the quinine in it will stop the twitching.  I bought some and tasted it.  It was so completely horrible that I won't be having any more- I will just sit and twitch, thank you!

Here is a picture of the butchery done on my poor arm!

almost to #4!

Well, surprisingly my leg acheyness wasn't debilitating after halloween, but it was still there, and it still is.  Other than that, I feel relatively well.  Thank goodness because I have been very busy with the kids lately!  There was halloween, then getting the kids to karate after school.  Saturday was insane!  Cameron had karate early, then Ethan had a karate belt test that afternoon.  Immediately after the belt test, I had to run Ethan to the middle school ( far away in the middle of nowhere) because he had an opportunity to see/hear a professional symphony.  There was no time to go home, and he had to be dressed nicely, so I brought clothes with and made him change in the car on the way there- NOT something a 12 year old boy wants to do, but we had no choice.    We got there just in the nick of time to drop him off.  He ended up not getting home till midnight!  wow!  Thankfully Jim was off that night, so I made him go pick Ethan up while I went to bed- I figured I had already done my running around for the day!
I ended up being very happy that Jim was off Saturday night- Sloane came down with a stomach bug and threw up about 6 times in the night.  For the first time in my life as a mother- I never got up with my sick kid- haha!  Jim did it all!  Mind you- he didn't have to get out of bed- he is working nights, so on his day off, he just stays up all night long so really- cleaning up puke gave him something to do. LOL!  I was very thankful that it happened that night! 
Monday I had my labwork and pre-chemo doctor appt, as well as an appointment with my plastic surgeon.  Sloane was still sick so I was in quite a predicament.  She couldn't go to school, and I couldn't bring her with me, as kids aren't allowed in the chemo room (that is where I go to get my labwork since they have to access my port)  not to mention, bringing a sick kids to a place full of people with little or no immune system would probably be frowned upon!  Luckily I have wonderful neighbors!  My friend Leah, whom lives across the street didn't mind taking my pukey child into her house for the day.  Thankfully she didn't throw up, she just layed on the couch and watched a movie. 
I was hoping to get home as quickly as possible so I could take care of Sloane but you know how the best laid plans go.... As soon as I got to the lab, I knew I was in trouble.  There was a long wait just go get my labs drawn!  I finally got that done, and went downstairs to wait for my appointment.  After awhile I started getting nervous- I was needing to be at my plastic surgeons office in 20 minutes!  I talked to Fred (the best nurse ever) and told her I would go to my other appt, get my boob filled, and be right back.  I NEVER have to wait at my plastic surgeons......yea.  She was fine with me going, so I left- got to my other appointment and guess what, I waited and waited :(  I finally got my fill- and boy I knew when he got to 50cc's!  OUCH!  I really felt a lot of pressure this time, and actually it turned to pain rather quickly.  He told me that I may need to slow down my fills if I am starting to feel that- yet I don't have time.  I need to be finished with this process by the end of december, so that I will be done before I start radiation.  Hopefully it all goes well!   Anyway- I left there, and quickly returned to my oncologists.  I got into a room pretty quickly but then there was some sort of emergency upstairs so I was in there forever.  I really started getting kind of pissed.  I initially got there at 10 am, and here it was after 1pm and I am still there!   Well, the NP finally came in and told my my labs were fine, and the echo that I had done the week before was also fine.  She wasn't sure what my muscle fatigue/weakness was from.   I have also been having some twitching in my arms and in my face- I didn't really think there was a 'fix' for that, but she told me to drink one small bottle of tonic water a day- apparently it has quinine in it, which stops the twitching!  Jokingly, I asked- with gin?  She said: sure!  gin, vodka, I don't care what you put in it, just make sure you drink 1 a day!  I must try it because I am very curious to see if it helps!   I am also starting to get watery eyes.  Those are caused from the Taxotere- and they are called:  Taxotears! hahahahaha!  Yes, for real!  It isn't too bad yet, but I do need to make sure to have a tissue in my purse at all times, just in case I start 'crying'.
The very worst news of my doctors appointment: my weight.  I found out that I have gained about 12 pounds since my diagnosis.  crap!  I knew my pants were getting tight, but I didn't think I was up that much!  It really upsets me.  During my 'good weeks' I really need to make more of an effort to eat healthy/light foods rather than this free pass shit that I do when I don't feel good.  Almost makes me wish chemo WOULD make me puke!  Or at least make me not interested in food.  Why didn't I get THAT kind of chemo???
I finally got out of there close to 2pm.  That was a really long appointment! (well, 2 actually)
Then, in the evening, Ethan had his first band concert of the year.  As per my agreement with Ethan, I had to wear my wig.  I really don't like to wear my wig that much, and certainly not for 2+ hours!  That thing is itchy!  I was so worried about it, I took a pain pill right before I left so that I would be sort of  'happy' when I was there, and not mind my wig so much!  I also decided to try out a wig cap- I haven't worn one with my wig before because I was worried about it making me hotter, and since starting chemo I am always so hot and sweaty (chemopause!) Thankfully it worked.  The wig was much less itchy with the wig cap on and I didn't break into a sweat too badly.
And now I am ready to begin number 4 tomorrow!

Halloween fun!

I decided to take advantage of my bald self this year.  I haven't really dressed up for halloween in a long time, but as soon as I knew I was going to be bald all fall/winter- I knew i had to use it to my advantage for halloween!  Immediately, I thought of Aang, the Last Airbender.  Our family loves this series!  While my mom was here in October, I had her help me sew this costume.    Then on halloween I went out trick or treating with the kids.  It was the first time I had gone out bald in front of EVERYONE!  I had a lot of people shout - it's AANG!  and one girl came up to me and asked- are you a girl or a boy? ha!  I didn't answer- I just moved along.  When we got back home, I was about ready to colapse.  I hadn't done that much walking in a long time- I had to rest all day long so that I would have the energy for it all- I am glad I did, because otherwise I may have not made it!  Anyway- when we got back home, we pulled some chairs out in our driveway so we could pass out candy.  So many people came up and started taking pictures of me.  It was kind of weird, but it was cool that my costume was so awesome that people needed to document it!
Sadly- the kids didn't really get any great candy that was worthy of me stealing when they went to bed. What the hell is up with that?

Disappointed that I don't need a blood transfusion. WHAT?

Its been a rough couple of days here, unfortunately.  Last week (1 week after chemo) I felt wonderful!   I thought that it was odd that at my last labwork appt, they told me that my hemoglobin was low; because I didn't feel tired really, like you usually do with low iron.    However, the day before that my legs had started getting sore.  I thought it was kind of a fluke but it started getting worse and worse- I would walk from one end of the house to the other and it made my leg muscles feel like I had been running on the treadmill for 30 minutes.  Then my hands started not cooperating- I couldn't manuver them well enough to tie a scarf on my head, and they also get really shakey at times.  I started thinking it must be the low HGB levels, because I already had my low from chemo and had gotten better.  So I called the clinic yesterday and went into have my bloodwork a day early.  Turns out my HGB levels had gone up (gotten better) and everything else looked great too.  So- it is just chemo and there is nothing they can do to fix it.  I was actually really upset because I wanted it to be something fixable.   I had soooo hoped it was just the low HGB, I could get a blood transfusion, then go home and start feeling better.  Yes, I was actually looking forward to the thought of a blood transfusion.  I guess when you sit in a chair every 3 weeks for 6 hours getting poison pumped though your veins, things like blood transfusions just aren't that intimidating anymore.... I am really very worried that the way I am now is the best I will be for the next 2 months.  The hard part of this is that in my mind I feel great.  I do not feel tired, and I don't feel like I need to rest or nap- I feel rather energetic, but then I go to move around and my body is not cooperating with me.  It sucks! 
I have to take the kids trick-or-treating tonight and I am really worried about how I am going to be able to do it.  I am going to try to sit around and be still as much as possible today so that I will hopefully have more mobility tonight.  Not looking good though because just takingSloane in to her preschool class, I could barely walk :(  And no, I won't be having the neighbors take the kids for me- I have the very best costume in the world- it ROCKS!  And I will wear it and walk around the neighborhood if it damn near kills me.

I need to pump iron

Friday I went in for my labs and an echocardiogram to make sure the herceptin isn't damaging my heart.
The echo was fast.  While in the waiting room, I was talking to a woman there that finished chemo in April.  She was still wearing a scarf over her head(!!!!!!!)  I asked her about it, because I was kind of freaking out a little when she told me how long it had been since she finished.  Apparently when her hair grew back in, it grew in 'bad'  so she shaved it off and started all over again!  Crazy!
I then had to go back up to the chemo room to talk to the nurse about my labs.  My white blood cells were very high!  great!  I figured as much because I feel really good!  But she told me that my hemoglobin is super low- which is indicative of my iron levels.  She said if they get any lower than they are now, I will have to get a transfusion or infusion- not sure which she said.  Bah!  She gave me a list of iron rich foods to eat, but she also told me that even if I eat a lot of them, my numbers will only go up a tiny amount probably.  So, hopefully they get better by next week!   I am kind of surprised because of how good I am feeling- relatively energetic!  However, my legs have been very weak the past few days, and increasingly so every day.  They aren't achey in the knees like they get right after chemo- more like my whole legs are just weak, the way they get after about 30 minutes on a treadmill.   I can walk across the room, and be nearly exhausted!     So I am thinking it is probably related to the low iron.    After doing some research- I found that it could also cause excessive sweating and a feeling of heartburn.  Hmmmm.  It would be pretty sweet if I could fix the iron issue and make the heartburn and sweating go away, or at least get better.  The heartburn isn't terrible right now, but the sweating- oh the sweating!  If that doesn't get better soon, the rest of the people living in this house are going to be very cold this winter while I have the heat turned off to reduce sweating! haha!
The other new weird side effect I am having is muscle twitching.  Sometimes it is in my arm, other times in my leg.  Usually it is in my face though.  It is VERY annoying!

Is it okay to tell your doctor to shut up? I don't care, I do it anyway!

I must say, this has been the best chemo cycle so far!  I feel pretty darn good!  I have been going to a lymphedema therapist, and she has been doing massages on my arm- mostly just to show me what to do to myself if I do have any swelling in my arm.  She said that people typically have between 8 and 24 lymph nodes going to their arm.  I had between 13-16 of them removed!  Yikes!  So far I have notices some heaviness, but no noticable swelling, but it is really hard to know if any of it is lymphedema or not because it could just be recovery from surgery, or carpal tunnel because I have CT bad in my right arm.   The lymphedema therapist fitted me with a sleeve to wear any time I fly and also if I am doing something really strenuous and repetative like painting walls.  Hopefully I can stay on top of it and it will never really develop into a problem.
I went to see my plastic surgeon this week and as soon as I saw him, I promised I wasn't going to throw any tantrums or freak out on him this time. LOL!  He assured me that it was fine, and doesn't bother him if I vent a little.  I guess breast cancer patients probably freak out in his office somewhat regularly.  So, after telling him I was going to be calm, I discussed our plans for the future.  He is going to over fill my right side so that it will be larger than what it will be in the end.  This is so that when I have radiation and it shrinks my skin, I will still (hopefully) have enough salvagable skin left over that we will be able to put the final implant in without doing a skin graft.  Then, I asked him about the timeline-
I said: so it will be 6 months after my final radiation treatment, correct?
dr:  Well......6 months at the very minimum
me: SHUT UP!!!  6 months.  You said 6 months.  NOT longer!
He is obviously married because what he said next was the right answer- 'I mean yes, exactly 6 months to the day'  As in whatever you want the answer to be, I will say.
LOL! 
me: thank you
sooo obviously I can not go into his office without yelling or freaking out.  It is pretty funny that I yelled shut up to him though!
He then filled me- another 50cc's.  After doing that, he said- that looks pretty good, ya wanna do another 50 today? 
me: uhhhh NO
then after considering it for a minute, I told him he could put another 20 in if he REALLY wanted to.  He laughed and said no, he would just wait a few weeks. 
Thank goodness because I really don't think it would be very comfortable to get more than 50 at a time!

The good news is that if I lay down and look at my boob it is really starting to get big!  It isn't nearly as noticable when I am upright.  It is more sore this time though- which makes me even more glad I didn't get more of a fill than normal.

halfway!

Well, I had my 3rd treatment on Wednesday!  It was the same as usual, and I was there all day long.  Gosh chemo takes so freaking long!   There was some excitement that day because while I was sitting there getting my pre-meds, the guy sitting next to me started having a heart attack! Yikes!  He didn't really look like he was doing that well when he first came in, but then when they started his chemo, it just got worse.  The nurses all took good care of him and really- he was in a good place to have something like that happen, since he was able to get immediate medical attention.  I am sure he was fine after they got him to the hospital.  It sure did liven up the afternoon though! 
Thursday was a pretty good day, and then friday as usual I started getting worse.  It always seems to start with upper body stiffness and pain.  My entire head also feel like it is filled with chemo meds and it makes me sloshy!  No other way to describe it really- My vision gets weird and my ears have fluid in them and I feel my whole body move with every heart beat.    This time around it seems like my heartburn is kicking in sooner- boo! 
My mom is only here for one more week to help out.  I am having her help Cameron with his science fair project and also carving pumpkins- that will be 2 major tasks out of the way.    The kids seem to be over the 'mom is sick/lets be extra good and nice' thing.  They have been not getting along and throwing tantrums and annoying the crap out of me.  Hopefully they get over it soon. 
I did find out at chemo that my radiation will be 6 weeks long (huge frowny face here!!!)  I have been looking at some other options in the Houston area with Proton therapy, but it doesn't appear that they will pan out so I will likely get 6 weeks of radiation after chemo is over.  Now I just need to figure out if I can handle starting grad school in January or if it will kick my butt!  It doesn't help that I have chemo brain and can't really think much at all ;)

going for #3 tomorrow, and I am very TIRED

I have found it so incredibly hard to keep up with this blog for the last few weeks.  Lots of fall activities going on and I am just.so.tired.  After my first treatment I felt like I had a good amount of energy after 2 weeks (still with some down time) but this time I am just always tired, ready for a nap about an hour after waking up.  And yet, when I do try to nap, I can't.  I just lay still and close my eyes but I am still awake.  Just laying still helps me feel better but I sure wish I could actually get some sleep. 
I rarely wear my wig these days- it is so, so itchy and my scarves aren't!  I also don't feel comfortable going bald anywhere now- because my stubble is GONE.   I have gone from the buzz cut that could make people think- 'hmmm, maybe she is just kinda butch'...to 'definately cancer patient'.  ick.  Not that the scarves are any different but it makes me feel better. 
I go in for my 3rd treatment tomorrow.  That is kind of exciting because it means I will be halfway done.  The time has gone by so quickly, yet the bad week after each treatment seems sooooooooo long.  However- as with the other treatments I have a large amount of anxiety about it.  Not the treatment itself, but the steroids (that I started today) which make me feel crazy, and not sleep well for 3 days, and make me transform into a human furnace!  Last cycle I took a large dose of benadryl before bed each night and it really did help me sleep better so hopefully that will be how it goes this time also!  Then, last cycle I got a bit nauseated on the ride home from treatment and it stayed around for the evening.  Hopefully it doesn't get any worse than that.  I would love if I could keep from puking this entire time on chemo!   And now my new thing to worry about- glutamine powder.  Ugh!  That shit feels like I am drinking sand. Someone suggested trying to mix it in with jello and really that sounds like a fabulous idea, I think I am going to try that this time.  It is supposed to help with nerve damage, joint pain, and mouth sores- all of which I had much less of on treatment 2 than on treatment 1 so I really feel like I need to use it, but the sand part makes it really hard to do. 
For as tired as I am this time, it really makes me feel like I am on a downward spiral.  I worry that the side effects are going to keep hitting me harder and harder and it will be more difficult to recover and have good days.  Not something that makes me have a good feeling about the holidays coming up, especially with Jim having to work so much.   On that note- if nobody hears from me for the next week it is because I am hopefully sleeping and possibly molting (it kind of feels like that on day 3-4 LOL)

Dodged a bullet



Yesterday I was able to walk and move around relatively well all day.  WoooHooo!  The bone pain was definately there but way WAY less severe than it was last cycle.  It is still sticking around today too apparantly but I still feel like I dodged a bullet.   Claritin, Aleve, and glutimate powder are my super heroes!  I will be honest- a little part of me hoped all these extra efforts wouldn't work.  Well- the glutimate powder part anyway- and maybe that didn't help at all but since I added the combo of all 3 I don't know which was magic and which wasn't....  The glutimate comes in a packet- it is powder.  I have been adding it to my morning breakfast smoothie which consists of OJ, milk, and vanilla protein powder.  These 3 are palatable and somewhat like an Orange Julius.  But adding the glutimate powder- ugh.  It is like adding sand.  It is gritty and makes the smoothie very foamy and gross.  It doesn't add any flavor but frankly- when it adds sand grit, who cares if it adds flavor or not. 

Last night I got my neulasta shot in the mail.  I get to give it to myself next time.  Not sure if I told you all about my experience with this last week or not.  I had to go get it at the hospital- I haven't been going all the way downtown for my neulasta because it is just too far away, but even getting it at the local hospital is time consuming.  I had a plan of telling the doctors that I was just going to do it myself, so I could get it at home.  Then I was going to just find a willing neighbor to give it to me.  We have a neighbor that is medically trained, as well as a couple of diabetics on the street.  I figured, on shot day- one of them would be home and I could sucker them into jabbing it into me.  Not so lucky.  They told me that if I was going to do it at home, then I would have to give myself the shot in the hospital so they could watch me do it.  sigh......  I am not scared of needles, and I have pierced many many things- on other people as well as myself but that was in my wild days and a shot seems somehow more scary.  Well, they gave me the shot, I was holding it and holding a handful of fat on my belly- I hyperventilated a bit and jabbed it in.  Yeah!  I did it!  And it didn't even hurt at all.  phew!  So I got the okay to do it at home :)  That is one less appointment I will have which is pretty sweet!

The insurance delivered it to my door next day air- it came in a huge cooler with ice packs (I need to keep it refridgerated)  It is pretty funny that they wasted this huge box- the box the shot came in is the smallest container in there- and there is only 1, so after next cycle they will have to send me another one of these packages!
 

It has been so nice having my mom here.  She has helped out so much with the kids and she has made me a ton of scarves.  Her birthday was on monday and I was way too weak to do anything so she made her own birthday cake!  Too bad it tastes like cardboard just like everything else :(  If you know me, you know it is a very hard thing for me to not like cake.







This should be called the side effect week!

It seems like this time around things are happening in pretty much the same order they did last time but maybe coming on a bit quicker.  I was definately more neaseated this time around though.  Thankfully that was all it was- SO glad I am not a puker!  I was also glad to find out that a mega dose of benadryl will helps knock me out since the steriods I am using keep me up for 3 days otherwise.   I still had the same issues with it being hard to breathe, but it only lasted 2 days.  I also got fluid in my ears just like I did last time.  Isn't that just weird???  And so far this cycle the worst symptom has been heartburn.  As you are reading this, you are thinking- oh heartburn, that isn't too bad, just a tad bit uncomfortable.  No.  This was like an actual fire ball in my chest trying to claw its way out sideways rather than just going up!  Yes, I know you are thinking fireballs wouldn't have claws.  This one did.  I promise.  I was already on the Protonix rx that the doctor gave me.  Then I took a Zantac , then I took about 100 tums....I was really getting no relief.  Finally someone suggested taking benadryl- and it seems to have helped.  Today the heartburn seems to be gone.   Also yesterday, during my heartburn day I was FAMISHED!  Jim and I took my mom out for lunch because it was her birthday- I ordered chicken and dumplings, a cucumber salad, and cinnamon apples.  After I devoured that I ate all of Jim's coleslaw.  Then I ate all of my mom's coleslaw!   I could have eaten more but I was so disgusted with myself that I had to stop!  I will try to remember next cycle to eat less on my heartburn day and see if that helps, because I didn't do myself any favors yesterday, I am sure of it.
Today is the day I was expecting to get bad bone pain from the neulasta.  I could feel it setting in, but I am still able to move around pretty good and I haven't  taken any pain relievers other than the Aleve.  Woot!  The new regimen of drugs seems to be helping with that- that makes me very happy.  Tomorrow it is off to get labs done and then to see the plastic surgeon- it is another boob growing day :)

Oh, and I finally wore one of my scarves!  My wig was dirty and I needed something for going to lunch with my mom- It gave me great amounts of anxiety because scarves scream cancer patient.  I finally got one on, and tied it a million different ways before I was happy with it.  I think it looked nice but I felt rediculous!  Today I am wearing a different one and I feel kind of like a pirate.  I love that my wig lets me look normal.  It is kind of fun to have new colorful accessories to play with though- if you can get over the fact that it makes you look like a cancer patient...

On to cycle 2!

I found out at my appt before treatment that radiation is on the table- something fun to occupy my time after chemo.... I knew it was likely, but I still hoped from every inch of me that they would say NO- you dont need radiation!  The truth is, it just doesn't fit my schedule.  I was hoping to start school in January, since it already got pushed back.  Even without RADS it would be hard to do- I still will have my herceptin infusions until next september, and I still have my reconstruction.  Rads aren't terrible from what I have heard but I don't have the freaking time!!!!  And it will mess up my reconstruction- possibly resulting in me needing surgery to remove skin from my back to put on my boob since the radiation treatments will ruin my boob skin :(  Well, I see my plastic surgeon soon so I will ask him what he thinks of it all, and maybe get a better timeline for everything. 

Jim took me to treatment #2.  It was a really long day- we got there at 8:30, upstairs for labs, downstairs for doctor appt that took FOREVER.  She gave me more rx for heartburn and some other meds to take to help with the bone pain from neulasta- I now get to add claritin once a day, 2 aleve 2x a day, and some delicious glutimate powder.  The doctor seemed pleased with the amount of side effects I had other than the bone pain, so she sent me on my merry way- upstairs for chemo.  I got up there at 10:30, and there werent any chairs available- full house today!  They finally got a chair ready for me and it was almost noon before they even hooked my up to my premeds.  Jim was still haning around but he just stood in the middle of the pod, playing with his phone, not even talking to me- finally I was annoyed enough that I told him to just leave... There were some nice girls sitting with me getting treatments.  One of the women was getting her last chemo- she was SO excited!  Whoever turned the television on, put it on a western channel- It was terrible.  There were all these old shows on that were horribly boring.  Sad thing is-of all us women sitting there, you know none of us were enjoying what was on the tv, but none of us did anything to get the channel changed.  I sat there until 5:30 watching Bonanza type shows....  Jim came by and picked me up.  I didnt feel terrible but I was a little queasy- ugh, not how I want to start out a new cycle!

more about my hairless life

I have decided that going somewhere bald feels like going to the same place completely naked.  I don't understand why it doesn't just feel like you got a new haircut, but it doesn't.  I don't care if people know I have cancer.  I don't care if people see me wearing a wig and know I am bald underneath and wearing a wig, just like I know people know that I have boobs (well, just one) and all sorts of other body parts under my clothes, Yet I like my clothes and I like having hair on my head- even if it's fake and everyone knows it.  My wig is not terribly uncomfortable but I have found that a hat or scarf is actually much much more comfortable.  Yet- I really feel better walking in some place with hair.  I am wearing a scarf today- trying it out.  I had to go to the dentist this morning and I was worried if I wore my wig it would fall off while I was laying back- LOL!  So, I sucked it up and wore a scarf.  I still have it on actually- it feels nice enough on my head, whereas my wig comes off the second I walk in my door.
I was telling Jim the other day that my head hair isn't the only hair falling out.  His response? YES! Like he just won the lottery!  He then goes on to remind me of the hairless egyptian cat he has always wanted and my response has always been hell no!  He said now I get to be his little hairless egyptian cat.  Oh boy- I laughed for a good 10 minutes at that one, after telling him he was a big ol freak!  And I am sure he doesn't even tell me the more freaky things that come into his crazy head!

finding my comfort zone

well, it's been a few days now that I have been a 'baldie' and it has been an interesting few days at that.  The first night, I took a shower.  A shower on a bald head is a completely new experience.  WOW!  And I realized quickly when my head wasn't under the stream of warm water that it was freaking COLD!  My head caught every little breeze.  After my shower I went to bed- with my cold head.  I had a couple of little caps that I bought- one specifically for sleep, but it is rather thin.   Us cancer patients are warned that we might get a cold head because it won't have that hair as insulation.  Well, I wore my little cap to sleep in and my head still felt cold!  Since then- I wore this huge, heavy knit hat that my mom made for me- this thing is meant for a cold snowy day- I wear to to sleep at night! LOL!
The day after shaving my head (Thursday) I had a lunch date with my CASA supervisor.  It was the first time I would have to leave my house without MY hair.  Yes, I had my wig and I fully intended to wear it, but still- I was terrified.  Honestly, I felt like I was gonna puke.  I put my wig on and got in the car.  I pretty much was in full anxiety attack mode at that point.  I called my grandma while I was driving, just so she could distract me from freaking out.  I talked to her all the way to the office- and felt much calmer by the time I got there- thank you grandma!!! 
My wig is really nice- it is very much like how I might wear my hair normally- well, except my real hair has always been much to thick to style the way my wig is.  But it looks like ME....We went to my favorite restaurant in the world- Thai Garden.  My favorite waitress in the world (who conveniently works at my favorite restaurant in the world) was there.  And she recognized me.  That was nice too!  Crazy things you worry about when life goes awry and you lose your hair I guess....  We had a wonderful meal, and discussed non cancer stuff- my supervisor uged me to come and take a paid position when I am 'ready'  which was nice but I don't know that I would ever work there as a paid person- my 1 tiny little case gave me so much grief that I can't imagine having more than 1 case at a time! 
After lunch, I went back home- and the wig came off.  It was terribly itchy when I first put it on, but after about 10 minutes I got used to it and it was actually quite comfortable.  Still- off it came when I got home.  It does not bother me to be bald at home.  Unless the air conditioner is on- then I need my hat!  An hour later, I had to go pick up Sloane from preschool.    All the teachers there know what is going on- but still a few of them thought I just had a new haircut- and they were really quite shocked to find that it was a wig!  When I got to Sloane's room she announced to the class- 'Hey, that is my mom!  She is wearing hers new hair wig!' All the while beaming from ear to ear.  Then of course- she said 'Now take it off mom, show them yours haircut!!!'  LOL!  I was like- uhhhh NO!  She was really disappointed that I didn't stand in the middle of 8 four year olds and rip off my hair to show them :)

Thursday evening, both Ethan and Cameron had their martial arts class.  Cameron and Sloane both desperately wanted me to go in there bald.  I rationalized it that I DO look not half bad right now- especially since I still have stubble- once I lose that, I will definately look 'sick'  Also, I know most of the people in there so it is kind of a 'safe' environment.  Well, I couldn't drive bald so I wore my scarf instead of my wig until we got there.  Still kind of unsure- Cameron and Sloane are both chanting at me to do this- Ethan said 'no- don't do it!!!' But Cameron and Sloane won.  I took off my scarf and went in to sit down.  Really- I really thought I was gonna throw up.  I sat down and one of the owners came and talked to me, and I explained.  It didn't make me feel better.  I hated being in there with no hair.  I really wanted to just puke.  Then Sloane wants me to walk around the shopping center with her and go shopping.  No way in hell girl- I have no hair!  As soon as we get back to the car I put my scarf back on.  I did it.  I didn't like it, but I did it.

Team Tara

I have to share this wonderful gift I received.  This group of friends I have all got together to organize this- they all dressed in shirts and wrote messages for me the week I started my first chemo treatment.  All the sudden one day tons of pictures started showing up on our facebook page tagging me!   Talk about an ego booster!   The love I feel for these women is so great- they have given me so much strength.  I am pretty sure I did not get all the pictures even posted here- I got so many it is hard to keep track of them all :) And yes, this collage is much too big for the blog page- you have to scroll all the way to the right to see all the pictures- if I reduced the size, you couldn't read all the awesome messages everyone wrote!

And then it was gone...

Well, the inevitable finally happened.  Wednesday I was having massive amounts of hair fall out.  Every time I ran my hands through my hair I had not just a few strands, but an entire handful!  My scalp was painful and itchy, and there was hair EVERYWHERE!  If you have a dog, you know how gross it is when they shed their coat- large tufts of hair all over the place.  Well, that is what our house looked like but it was MY hair, not the dog's!  I knew it was time.   Luckily, my wonderful neighbor and friend Kim is a hairdresser and she lives right across the street.  I called a few of my friends and we all showed up at Kims house.  Oddly; Cameron, my 7 yr old that has been very excited about wanting to watch my get my head shaved decided to not watch, and Ethan,my 12 year old that hasn't wanted much to do with the entire experience decided to come and watch. 
I was so nervous and really trying to be okay with it- and I think for the most part I was okay with it but I did break down in tears once I sat in the chair and she put the cape around me.  It didn't last long though thank goodness, till I was back to my regular cheery 'must go forward' self. 
Once she started shaving, it actually felt kind of nice.  I definately felt much lighter!  And surprisingly for as much hair as I had already pulled out that day, I had a head full of stubble- no bald spots!  I don't entirely understand that.  Then after my head was fully shaved, we got out the duct tape.  Yes, you heard right- duct tape.  I had heard that you can use it on your head to pull up the remaining stubble and that it does not hurt- rather, it feels good because you get that crap out of your head!   After hearing about it I did research and found that indeed- it is a 'thing' people actually do and it really seems to not hurt- plus then you dont have the remaining stubble falling out all over the place making a mess!  I even went and bought fancy purple duct tape!  Well- we soon found out that designer colored duct tape is not industrial strength.  Kim's husband Steve went and got the 'real' stuff out of the garage- but alas, that did not work either.  Apparently my stubble was still firmly attached!
The pile of hair on the floor was amazing!  Must have been enough there for 10 wigs!
Before leaving I of course had to put my wig on.  Yes, I had to put my wig on to walk across the street to my house.  LOL!  Baby steps.... Most people on the street are my very good friends and they know everything, but not everyone knows and that is kind of how I like it.  I am very glad that I felt comfortable enough to allow my friends to be there with me while I had it shaved though- it did make the experience more fun and less traumatic.

And now I am left with a stubbly head- but it is a nice shaped head so that is a plus!   Jim told me to just embrace my innner Sinead!  I am trying, Jim, I am trying!

Hair today, gone tonight

This is what happened this morning.  I have hair everywhere, all over my clothes, my house, everywhere :(  tonight we are shaving it off.  I am kind of freaking out right now, hoping i get over it by thus evening!

ears, boobs, and wigs

I got my ears pierced the other day! Waahooo!  For now I have a nice cz stud in them.  Cute and shiny.  I also got my 2nd boob fill.    It is now quite obvious that a big part of my tissue expander is under my armpit.  It is gross and uncomfortable.  It reminds me somewhat of when I had my babies, and my milk would first come in.  My boobs would be so big that it was so thick under my armpits that I couldn't put my arms down all the way.  Well, my boobs definately aren't that big now but I still have that fullness under my right armpit.  It's gross.  And now that it has more saline in the expander, I can actually feel it.  Before this last fill- I could describe my boob as a rock with bubble wrap wrapped around it (with most of the bubbles already popped).  It is now like a beach ball that has been half way un-inflated.  You can squish one part and feel the liquid move over to another part.  Yes, this is now what I get to do for entertainment!
I still struggle with what to wear because the maste ctomy form they gave me at the hospital just isn't useable.  The nice silicone breast forms are very expensive and really I wasn't sure how useful it would be to have one since my boob size will be constantly changing.  However, while I was at the breast cancer store in the hospital picking up my wig, I found out that they have a neat silicone form that actually has stuffing in the back so you can still change the size of it during reconstruction.  AND my insurance will cover it 100%!  Now I just need to find the time to go in there and get fitted for my fake boob.
My wig turned out beautiful!  It is the perfect shade of red.  I had to buy shampoo, a brush, and a wig stand for it.  I tried to set it up in my bedroom on a little shelf, but the wig looked kind of creepy.  I decided to put it back in it's box until I need to use it, maybe it won't be quite as creepy then. 

Oh and here is a crazy little tidbit of info:  my first chemo treatment cost $24,000(!!!!) Holy shit!!!!!!  And that is only for 3 of the drugs, as my test drug is free.  Is that not insane?  And of course my insurance reduced that amount and I only have to pay $300 but still- what a crazy number-24,000.  I never would have imagined that it was THAT expensive!

If I last the whole day without losing my hair, it's a good day!

I am now at that point that my hairloss could occur at any moment.  I do hair checks multiple times a day, and so far things are still good!  I seem to spend a lot of time on my hair lately, making sure it looks really good, since its days are limited.  Once I lose it, I wont look normal anymore.  Well, I guess I really dont look normal now since I do have only 1 boob, but at least I don't look sick.  I have been pretty okay with everything else up to pinpoint and I hope tailoring my hair will be the same, but I feel this panic growing inside me, terrified of looking like a cancer patient.   My scalp started getting very sensitive and tingley last night.  I think that is the feeling of my hair follicles dying.  Tick tock, any day now....

Cardboard

I am finally feeling pretty normal.  Its so nice to feel normal!  Mind you, I definitely get worn out more easily; yesterday we went to the grocery store, then I came home and passed out. Other than that, the most long lasting side effect I seem to have is taste.  Or, shall I say lack thereof.  There are a few tastes I can taste- cardboard and bitter.  most things fall in cardboard category, chocolate, berries, and anything tomatoey are very bitter.  I tried all day yesterday to fine something good to eat.  After my morning coffee, Jim and I took Sloane to her dance class.  I decided to be good and get some protein in.  I bought a big box of protein bars that tasted really good pre-chemo. Well, I got half the bar down,despite its bitter chocolate taste.  Finally it got so bad I had to spit it out.  Mashed potatoes for lunch seemed to work out pretty well, though they were a tad on the cardboard side.  Rice pudding was also a winner- sweet cardboard.  I think I am learning to embrace cardboard as a good flavor.  It seems that the entire top of my tongue almost seems dead. It is such a weird feeling.    I still keep trying though; I made cinnamon rolls this morning and they smelled so yummy.  Sadly, they were a very plain cardboard taste.  Oh well, I shouldn't be eating cinnamon rolls anyway and that made it much easier to walk away.  Plus Ethan was more than happy to finish my cinnamon roll for me!

Whaaaaa!

I am supposed to be on the upswing here, but today is not really an upswing kind of day.  I am so achey!  My hips and knees and legs all hurt so bad.  I have had to take a decent amount of pain pills today just to be able to stand being awake.  My hips hurt so bad I actually have a very hard time standing up.  I wouldn't think that I would have this side effect nearly a week afterward!  My guess is that it is probably my neuslasta shot- I have heard that can cause bone pain and I thought I just lucked out and didn't have too much of it.  I really feel like crap today!  Bah!  I drove to pick up Ethan from school, and when he got in, he asked if I had to go get chemo today?  I said no, but I don't feel well.  He said- yea, I can tell!  Jeez, you know it's bad when a 12 year old boy that doesn't notice anything says you basically look like crap.     Nothing some vicodin can't fix, I suppose.

I wigged out Cameron

Monday I actually felt human- yipee!  My knees were starting to be very achey though, and only some slight tiredness.  My mom and I went out shopping and to lunch and I got along pretty well.  We found a local wig shop and decided to stop in- they mostly had fun cheap wigs.  The woman working in there was a young black woman.  After looking around, I pronounced that I wanted to try on an afro.  She was like- WHAT?  YOU want an afro? Hell yea I want an afro- who wouldn't want a head full of awesomeness?   She got quite a kick out of it.   So, I tried a couple of them and I must say, I looked pretty good!  It was pretty fun to wear and I am thinking I really should get one.   I didn't buy anything in there though but my mom found a really cute wig that she decided to get- just for days she doesn't want to deal with her own hair.
I decided to trick Cameron when he came home from school- I put my moms wig on and acted completely normal.  Mind you- my moms wig is reddish, but very short- very different from how I wear my hair.  Cam came home and I was talking to him and he was responding but hadn't really looked at me yet.  Then all the sudden he looked up and his eyes almost popped out of his head!  Oh, I wish I had video taped that moment!  He then nervously looked down and continued the conversation, but he looked up again and got those big eyes again... oh it was so funny.  You could tell he was THRILLED with it, and with the idea of me being bald.  He really things this is going to be such a funny thing.   So finally he gets up the courage to ask if I was wearing a wig now?  When I said yes, he was beaming.  He then asked- can I see under it?  Are you bald?  He was sooo hopeful about that!  LOL!  So he was disappointed that I still had hair but man, that moment is one of those things I don't think I will ever forget.  That kid sure does make me laugh!

so far, so good!

i am now 4 days past my chemo day, and it has taken me this long to feel human enough to write.  Really I haven't felt  like I was on my deathbed or anything, but still a pretty good amount of weird shit.  The day of chemo I really felt pretty normal.  When I went to bed, I noticed that I had some weird breathing issue.  I could breathe, but my lungs just felt....unhappy?  I slept on a pile of pillows and that seemed to help.   Well, except that I woke up REALLY early :(  But, when I got up on Thursday, I was feeling pretty good.
Got the kids to school then went with my mom to order my wig.  I did notice while doing my makeup that my skin was RED. It looked like i had a sunburn on my cheeks, arms, and chest.  I was also really hot- my guess is that it was the steroids causing that.  Other than the red thing though, things were still going well.   I ordered the wig and also found another possible wig that looked pretty cute- Need to check the other wig shop for that though because the one in the hospital is just too expensive.  My mom and I went out for lunch,   I didn't eat a ton, as I just didn't feel super hungry, but I was soooo thirsty.  I had probably consumed a gallon of liquids by lunch!!  After lunch we stopped at trader joes for some protein powder, then home.    By that time, I met up with Jim and had to go get my neulasta shot.  Luckily I didn't have to go all the way back to downtown- they let me come in to their office at the hospital near our house.   I was just there for a shot, so I didn't really expect any drama.  They sat me down and took my blood pressure.  I apparently failed.  90/56 isn't the number they were looking for (picky, picky!)  The nurse acts all nervous and asks the other nurse what to do...probably wondering whether to try again or get a body bag since I was almost dead!   Really 90 is low, even for me but often it is at 100, and the week before it was 93...the nurses were worried that I might need a bag of fluids though- but trust me, fluids were NOT something I needed!  Remember the gallon of fluids already consumed today?  Anymore fluids right then, and I might just pop!  I finally convinced then that I was feeling fine, so they gave me my shot.  Then I had to sit around for 15 minutes make sure I didnt have a reaction.  Then it was home for the rest of the day.  I was starting to get pretty tired!
Overnight there was one slight moment that I thought I might feel nauseaus- so I got out of bed and took a pill real quick (in addition to the meds they gave me to take regardless, just to stay on top of it) Then I went to bed and that was the only hint of sickness that I had! YEAH!!!!  I was still having occasional bouts of lung issues and I know this is TERRIBLE, but I didn't call the doctor.  I knew that they would either up my steroids or make me take them longer and frankly I just couldn't bear it.  I made sure I could breathe and that my airways didn't seem to be blocked- and I told Jim to keep an eye on me, but that was it.  I just couldn't do more steroids.  Those weird pills wont let me sleep, and I need sleep!  
Friday things were still pretty good, but I was certainly getting tired.  Then Saturday- yep, Saturday was THE day.  I woke up with this weird stiffness in my upper body and my skin was actually painful to touch.  And I was so, so, SO tired.  I think I slept most of the day. 
Sunday was much better but then Ethan woke up sick.  Are you freaking kidding me?? I can not have sick people in the house!  He was good about hand washing though, thank goodness- and so far I seem to have not gotten his cold.    I still lounged most of the day- and it was 2 solid days at that point, of wearing my pjs.  Finally though, I decided that Ethan needed his haircut.  I announced to him that I was going to get dressed and we were going to leave the house, so he needed to get ready.  He actually told me- yea, Right, you are SO not getting dressed.  LMAO!!! He then went upstairs and ignored me because he totally didn't believe I had it in me to get ready.  I did though and he was so shocked!  It did feel good to get out of the house! 
I am very happy that chemo doesn't seem soooo terrible.

who needs sleep anyway?

here I am, awake at 5 am, really I have been up since 4 but it took me an hour to say yea-no way in hell I am falling back to sleep anytime soon.  I am pretty sure that if i could lay on my side instead of flat on my back all the time, that would probably help me sleep, but nooooo, if I do that my tissue expander feels like it is trying to claw its way out of my chest- ouch!  Then add a huge dose of steroids and bam! sleepless night!  since I have had plenty of time to think this morning, i have decided that my fingertips probably actually hurt because I was holding huge blocks of ice for an entire hour- yea, probably some mild frostbite or something.  I still think that next time I will come with ice chips in some cups to just dip my hands in...

Chemo day #1

Packing my bag for chemo day was so much work!   I swear I packed for an entire weekend.  Food for all day- including lunch, granola bars, and other snacks, and a few drinks (I need to bring more next time)  a jacket, my tablet, my cel phone, chargers for both, socks, a few notebooks and a puzzle book.  I packed it all up on Tuesday night.  Wednesday morning I ended up waking up around 6- planning to leave around 7, to be there at 7:30.  Jim told me this was a bad idea a few days ago, because of rush our traffic.  I didn't listen too him- my bad!  We got there about 10 minutes late but I don't think anyone really noticed- phew!  I had to go to a chemo class- that is basically an informed consent class- you read about all the drugs that you have to take- taking note that they all basically say they can cause death, but hopefully instead it doesn't. LOL!  Of course it lists all the other bad side effects also.  After that, I got to go pick out a chair in the chemo room.  They had the shades all opened up so that we could see a really nice green courtyard outside.  Thank goodness for good scenery.  We chose a seat near a tv.  My mom came with me for the entire day (I know I was bored- I can't even imagine how bored she was!)  I am glad we got there early because all the seats filled up so fast that they ended up having a waiting list for chairs- that really sucked for my mom as she had to spend most of her time standing.  In the amount of time I was there, most other chairs all changed over at least one time- sometimes twice.  First they gave me steriods, benadryl, some anti puking meds, and a bag of fluids.  The benadryl made me kinda drowsy but I just powered through...After all those bags emptied they were finally able to start my chemo meds- I think it was around 9am when that started.  The first 2 meds had no effect on me.  The third one was the nasty one that causes hair to fall out.  I had to ice my hands for the entire hour that I had that drug pumping through me.  BURRRRR!  Of course, by that time I already had a jacket on and a blanket so at least the rest of me stayed warm.  Then towards the end of that hour, I started feeling kind of lightheaded and flushed.  That feeling stayed with me the rest of the time I was there.  The 4th drug didn't seem to do anything different and after they finished that bag I was free to go- it was about 3:30 when we finally walked out of there- Phew- what a long day!  I didn't use most of the stuff in my bag- I alternated between playing on my phone and playing on the tablet.

Here I am while all bundled up and icing my hands!

Overall- it wasn't bad at all- it just took a long time!  Once I got home I felt kind of 'off' and food didn't sound very good.  I didn't really feel queasy but just not normal.  I took a zofran just in case.  I ate dinner after that and really felt pretty normal.    Yeah- Day one of chemo: complete!  5 more to go!

The big day is coming up!

What a nice long weekend I had!  My mom flew in from Idaho on Saturday.   Yeah my mommy is here! then on Sunday we had a few friends over for bbq ribs and alcohol!  Monday we relaxed, which was really quite annoying because i knew how much i needed to do the next day, but oh well, we did enjoy relaxing!
Then I remembered that i needed to drink one of the containers of barium in preparation for the CT scan the next morning.  I chose berry flavor; it was nasty but really not as nasty as i thought it would be.  The trick to it is that it must be cold, and you should use a big straw!  i stuck that straw as far down my mouth as i could then sucked and sucked till i had to stop and come up for air! When I told Jim how I drank it, he said 'oh, so basically you deep throated it?'  yes, Jim, I guess I did! By Tuesday morning, I was a real pro,I grabbed that bottle and sucked it dont with a straw in 2 monster size sips. The tech gave me yet another glass full right before my scan- he expected me to take awhile to gag it down, but instead I demanded a straw and finished it in about 2 seconds. The tech was VERY impressed! Then he gave me an iodine injection. Interestingly,  years ago I had a reaction to an iodine injection, but it wasn't an allergy- it just made me puke. I was honestly really curious if this would happen again, or if it was just a fluke (fluke puke) so I let him give it to me.  I didn't say a word about any bad previous reactions.  Just to be sure though, I pulled my hair up out of the way and made sure the hospital gown covered my shirt...just in case! Thank goodness it went well! See, I never would have found that out if I had been honest! My exam also went well, and I start chemo tomorrow! I should also add, my mom and I went to grocery store afterward. They had taffy out and I got a bunch. When we got home I tried the huckleberry flavor. It actually made me gag. Thank you berry flavored barium! Thank you!
Then, I had to pick up my rx's at the drugstore- in preperation for chemo- 2 anti nausea meds and some steriods.  I was told to take the steriods as soon as possible- it helps prevent an allergic reaction to the chemo meds- not only are they poisonous (basically) they also cause allergic responses.  nice.  So, I got home and took my steroids and holy cow- I was so buzzed that I felt drunk.  Very weird!   
All ready for tomorrow!