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...