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!