Pathology Results :-)

"I am pleased to inform you that the pathology from your surgery showed no remaining cancer. This is the best possible result!" . . . direct email quote from my surgeon on 12-11-12. :-)  I later found out they tested the "good" one too and there was no cancer their either :-)

Oncoplastic Breast Reduction Surgery

I had surgery on December 4th.  The surgery was given several different names - Oncoplastic Breast Reduction, Needle Guided Breast Lumpectomy with reconstruction, breast preservation surgery, etc.  Back in April when I was diagnosed I wanted to have a lumpectomy.  To me, having a lumpectomy was the best way to still feel like me after cancer.  My tumor was considered larger, 3cm (anything over 2cm is considered larger) and if I wanted a lumpectomy I would have to do chemo first to shrink it to a size that can be removed by a lumpectomy.  So that is why I did chemo first, also called neo-adjuvant chemo (chemo after surgery is called adjuvant therapy). For me, having nipples (and the areola) was really important . . .  the thought of not having nipples (as is the case with most mastectomies) was a scary thought and not something I wanted.

I changed my mind several times and I really did give some thought to having a mastectomy, and even asked my doctor about a nipple sparing mastectomy but she is not comfortable with nipple sparing mastectomies and wont do them so my only choice to save my nipple/areola was to have a lumpectomy.  The advantage to doing neoadjuvant chemo is that you can actually feel the tumor getting smaller as you have more chemo.  I will say that was an added benefit that I didnt really think about when I made the decision.  After talking with several women who had surgery first and were wondering if the chemo was really working, I realized this benefit.
I noticed the tumor was shrinking a few weeks after my first chemo and it continued to shrink while I was on AC chemo.   I even got to the point where I didn't really feel it anymore.  I did stop feeling my breast after awhile.  Then I started having these weird pains, mostly when I woke up and was sleeping on my cancer side.  I had similar pains during the first few weeks of chemo and I thought they were the tumor shrinking, but really I have no idea what it was.  A few weeks after I declared I could barely feel it I did start to notice other weird differences in my cancer breast compared to my "good" breast.  I tried not to freak out about this, with some success, mostly because I stopped feeling it.  But there was something else there, and it seemed to move or be a little different each time I felt it.  During my first ultrasound I was told I had fat necrosis, or dead fat cells in my breast, likely from when I hit my breast as I was hurriedly going out a door.  But there was still something there and whatever it was would be removed during surgery.  This also meant that there was a high likelihood I would have a dimple or divot in my breast.  My doctors offered me an option - Oncoplastic reduction or basically a lumpectomy with a breast reduction to make them match.  After much deliberation I decided to go for this, even thought it meant I was going to cut the good one.

I have never been into big breasts . . . in fact in the past I have wished to have smaller ones but never would have had a reduction unless I was already having surgery on them and thought I would later regret that the they were no longer a similar size.  I also only had one shot at this . . . cause with a lumpectomy you have to have radiation to get the same survival rate as a mastectomy and radiated tissue does not heal the same.  My plastic surgeon will not do reconstruction on radiated tissue, so it was either now or never.  I took the proactive approach and decided to go for it because I thought that later on down the line I would regret that I didnt do it when I had the chance.  There is a risk that I will have to have a mastectomy if they dont get clean margins of the tissue surrounding the tumor.  This was not a decision that was taken lightly and I worry that I made the right decision.

Prior to starting chemo, they inserted a titanium clip into the tumor so that after chemo has shrunk the tumor to almost nothing that she can still find it and know what tissue to remove.  I am a little sketchy on the details of the surgery, but I do know that I had to get a wire inserted into my breast to help with the surgery.  That was fun - NOT but I'll go into details later.

I was told to arrive for my surgery at 6:30am . . . the night before and again the morning of surgery I had to wash my chest area with a special soap that was in these scrub thingies.  When I looked closer I realized it was the same soap that doctors use to scrub their hands prior to surgery.  So that morning I got up and washed again with that soap, which kindof seems redundant cause I just did it hours before, but I'll do anything to prevent infection.

When I showed up they called me back in right away (unlike my SNB where I had to wait), had me get into the lovely paper gown, gripper socks and hairnet.  The nurse didnt call it a hairnet, she called it my "party hat" which since I dont really have hair I appreciated that :-).  They also started my IV on my battered left hand while noting how beautiful my right hand veins looked.  I noted how different things were than when I was there for my SNB in that I am more comfortable with people poking and prodding me and I even knew that my hand was the best place to start an IV Then she allowed my hubby and his Mom to come back and be with me.  At 8am I had an appointment in the Ultrasound/Mammogram area.  Someone promptly came and took me downstairs to that appointment where I waited in the hallway.  This is the same area where I had my inital ultrasound and mammogram so while they left me sitting there to think, not fun.

The ultrasound technican then came and got me and got me ready to do the ultrasound and insert the wire.  She then scanned my breast several times and couldnt see the tumor at all so she had to order a mammogram assisted wire insertion.  I had a general amoutn of  fear at this point . . .  but the technican just explained that the wire had to be inserted under mammogram compression and now I was scared.  Really scared.  And she got me in the wheelchair and put me outside the door to wait for the mammogram room to be available.  Oh boy, more time to freak out about my surgery and that I will soon be under mammogram compression for like 10 minutes or so.  For those of you lucky enough to never have a mammogram, take your breast and put it between two 2x4 pieces of wood and then clamp them down.  Sounds like fun, right?  If you have breasts and didnt wince at that analogy then you probably didnt really think about it.  Finally the room opened up and they took me in there.  I had a regular mammogram, just so I could remember how much it hurt.  Then they set up for the real procedure and locked me into the modern day torture device.  The technicain was really nice and was trying to make it as painless as possible but it is just a painful procedure.  The technican was working wtih the doctor to find the exact location of the clip, this meant that after the mammogram I had to remain under compression for the 90 seconds that it takes for the mammgoram film to develop, for the technican and doctors to look at the film, align the machine, swab me with some sort of antibacterial and then for the doctor to insert a needle and take another mammogram "picture" to make sure that he inserted it in the right place, then insert the wire through the needle, and do some other things, then finally let me go.  I was allowed to sit during this time, but I dont remember the final things the doctor did, probably because I was in survival mode to deal with the pain.  Oh and I forgot to metion, at some point they did insert some pain meds, but it still hurt.

After all that was done they put me in the wheelchair in the hallway again and called for transport.  I guess the transport guy was pretty unhappy cause he was giving the technican attitude when she called and when he picked me up he never said anything to me.  As soon as I got back to my preop cubicle there were several doctors and nurses waiting for me and I had to pee.  They let me pee but my preop nurse barged in to help me flush and carry my IV.

Then I had a "meeting" in my cubicle with all the doctors . . .the curtain was drawn and the anesthesiologist, general surgon, plastic surgeon and nurse were all in there.  It was a party.  They were all trying to do their part as quickly as possible to get me in surgery as I think it was already an hour past my scheduled time.  The anesthesiologist asked about prior reactions to the aneshesia and if I had any loose teeth.  She also mentioned that I may wake up with a sore or dry throat from the tubes.  I mentioend that chemo has made my throat dry and she replied then probably you will wake up with a sore throat.  She is also pregnant so my only question/comment for her was to please not go into labor during my surgery, ha ha.  Then the General Surgeon Initaled my right shoulder area . . . dont want to get those messed up, but since I now had a wire sticking out of that one I thougth it was a low likelihiood that she would get it mixed up.  But I am glad that is their policy.  Then the Plastic Surgeon went to work marking me up with her marker.  She looked at the shape of my breasts and then was looking where the nipple would look best and then looked at each breast differently and tried to think about how the right one would look/change after radiation.  She seems like an extremely detail oriented person and I like that in a plastic surgeon.

Then after the docs asked a few more questions, called my hubby in to give me one last kiss they gave me the "happy juice" and yes, that is exactly what they called it (same with my SNB).  She inserted something in my IV and it hurt . . .maybe cause my veins are so battered and abused or maybe there was a little clot there.  I dont remember anything after that, ha ha.

Then I started waking up.  I heard voices but dont remember opening my eyes.  I heard a male voice asking me if I was in pain.  I had to stop and think about it and yes, I was in pain.  I tried to fall back asleep but he was telling me not to fall asleep.  When you are coming out of anesthesia you are incredibly obedient, he could have asked me to stand on my head and count backwards from 10 and I would have done it.  But really I wanted to fall back asleep.  He asked how bad my pain was and I said 5 . .. he asked if I wanted pain meds and I said yes.   He then gave me a pill, a little water and made me take a bite of a cracker.  Then I fell back asleep.  I remember waking up later and I could hear people talking and I think it was my hubby and my Dad.  I dont really remember too much as I was coming to but I do know that they were pumping air into my paper gown.  I started to wake up but was still groggy.  I asked for water cause my throat hurt really badly and felt really dry.  I was still in a daze and had all of these people around me - nurses, my hubby, my Dad, hubby's Mom, overload for someone just waking up.  I snuck a peak at myself and saw there was this bra on me but that was prettymuch all I saw.  The nurse then did some tests and said I could leave when I was ready.  I wanted to go home, but I didnt get ready just yet.  I dont know how long it was, but I waited a little while then got dressed and ready to go.  I wasnt really in any pain but looking back I think I was a little too drowsy to leave.  I had a bunch of people help me and of course I got the wheelchair ride to the car.  My Dad even gave me some pretty flowers as we were leaving.
The car ride was uneventful and I managed to walk up the three flights of stairs to my place without any trouble.  Once home I started to feel hungry.  I knew it had been a long time since I ate so I asked for some really easy to digest foods like chicken broth, apple, rice and black beans.  They all went down ok but I was getting tired.  I also started to have some pain.  Since the pain meds normally make me sleepy and I wanted to stay ahead of the pain I took a pain pill then went to the bed.  I was playing on my phone for a little bit then decided to close my eyes.  Every time I closed my eyes I got dizzy.  WTH??  The room would spin like I had too much alcohol, um, I mean so I have heard happens when you have too much alcohol.  At this time I also realized I had not peed since surgery and it had been several hours.  I had the urge a couple of times but wasnt able to do it.  I was starting to get worried.

Despite being tired I couldnt sleep so I went to the living room to watch some tv/play on the computer.  Then it hit me.  My stomach didnt feel well.  I walked to the bathroom.  Then I had a feeling I havent felt in years, like I was really going to throw up.  Unfortunately the bathroom has a mirror along the wall of the toilet so I could see myself.  I did not look good.  I gave myself a pep talk that I would not throw up.  Then I threw up everything I had eaten while trying to not move my chest too much which is prettymuch impossible. And I missed, not a lot but when we are talking about vomiting missing even a little bit is too much.  My stomach felt better though and surprisingly enough my drymouth feeling started to go away.  I also went pee afterwards so that was one less thing to worry about.

I watched tv for awhile then went to sleep on my wedge pillow and had an uneventful night.  Till I woke up the next morning and I couldnt talk cause my throat hurt so bad.  My throat hurt worse than my breasts.  My throat was sore from the tubes during surgery.  I wanst really hungry but wanted to drink a lot.  I had some water, "juice" from black beans and tea.  Nothing really helped.  Later a nurse told me to suck on ice chips to help with the swelling and then a nurse at my first post op appointment suggested I get Sucrets of Cepacol.  We went to CVS right after the visit and got the strongest Cepacol lozenges and they did help tremendously   I also ate a couple of popsicles I had left over from my Taxol days too.

All in all I dont feel that bad and surprisingly enough I dont really have any pain.  I have the annoying feeling like I am wearing an underwire bra that is digging in, but no real pain more of an inconvenience.  And I am happy with the decision to do the oncoplastic reduction cause they are the same size.  Now I just need to find out if my margins were clear.  I have follow ups with my general surgeon, plastic surgeon and Oncologist this week.  If my margins are clear I will then meet with the Radiation doctor to talk about radiation that is required for all lumpectomies to get the same survival as a mastectomy.

Wow, I wrote a book!

What's next? Surgery . . . Lumpectomy

I am very thankful to be done with chemo although I have a new motto "I can do anything, I've been through chemo".  Even though it has made me tougher I still wish I didn't have to go through it.

I am now in the recovery phase . ..  chemo really beats up a lot of different cells in your body and the steroids and chemo do a number on your white blood cells.  I kindof feel like an old lady, especially when I get up from the couch very slowly and I can feel my muscles tightened up.  And I have fatigue too . . . I feel lazy and when I do get up and do something I get tired way easier than normal.

Since I have no eyelashes or eyebrows and I do not normally wear makeup I decided to take advantage of a class offered by the American Cancer Society called Look Good, Feel Better.  It is a class for people before, during or after chemo.  Several of my online friends who have had cancer have been to them and learned some useful tips.  They are offered at several hospitals and due to the timing I chose to go to one in Fullerton because it was the next available one.  This was the same week that I finished chemo.  Things were going great and I was on time and almost there when I was exiting the freeway and turning left to go back over the freeway . . . when a 20 year old kid ran the red light and hit my car.  I was not having a particularly good day up to that point, but it instantly got worse.  It was a relatively slow speed accident and after a second or two I still hadn't really processed the whole situation so I did what I do when I don't know what to do . . . I bawled my eyes out.  So many things were running through my head like Really Universe??  Have I not been through enough already??  I just finished chemo so now I get broadsided?  I felt very weak and vulnerable and lost at that moment.  Before I really processed everything there were a couple of guys at my window asking me if I was hurt or needed medical assistance   One called the police too.  They seemed a little lost and I found it hard to find the words to reply to them . . .all I could do was cry.  And cry and cry.  I couldn't help it.  The more I tried not to cry, the more I cried.  So I just let it all out and cried for a few minutes more.  One of the guys that came to help asked me if I could move my car and I just cried.  I don't think I ever answered him.  After a few more minutes I did move my car out of the way.  And then I just sat in my car and cried.  I finally composed myself and got out of the car and the cops came and we exchanged info and everything.  My car wouldn't run though so the cop called AAA.  Long story short I got my car towed and eventually made it home.  And I am ok.  But my car, not so much.  It was later determined to be a total loss :-(  So on top of all this I also have to get a new vehicle.  A distraction from thinking about chemo and surgery.

On to Surgery.  When I initially found out that I had cancer I looked at my options and having a mastectomy scared me.  If you want to have nightmares google mastectomy and look at the pictures.  I dont know why, but the pictures of women with no nipples just doesn't seem right.  So I really wanted a lumpectomy, if possible.  My tumor was 3cm which is rather large for a lumpectomy.  And of course on the day the doctors saw it, it seemed larger.  Sometimes after the biopsy things can appear different.  And at the end of that day when all the doctors were examining me, it did seem to go back to the size I remember it being although my oncologist still insists that it was 5cm.  So that is why I chose to have chemo first . . . to shrink it to the point where I could have a lumpectomy.

When I first started getting chemo I was really excited to feel the lump shrinking.  If anyone is trying to decide between neo-adjuvant chemo (chemo before surgery) and adjuvant chemo (chemo after surgery) I highly recommend getting chemo first because it is nice to know that the chemo is working and the lump is getting smaller.  I was feeling it regularly and it took longer than I would have preferred for it to get smaller, but it did get smaller.  But there has always been something still there.  I was told at the time of my ultrasound and biopsy that I had fat necrosis which is dead fat due to trauma.  I am hoping whatever I am still feeling in there is fat necrosis . . .it does feel different and is in a different location.  That breast does feel a little different too.  And I have been having some pains, but it could be scarring from the biopsy or something like that (I hope).

So because there is still something there and the doctor has to take a fair amount to make sure and get clear margins (make sure that they remove all the cancer) I was referred to a plastic surgeon.  The only real option for reconstruction is what they call an oncoplastic reduction.  Basically a breast reduction for symmetry.  The surgeon and plastic surgeon both feel that there may be a divot or dimple left after they remove what they need to remove.  I am not particularly vain and have questioned if this is overkill.  But then if I am lopsided it will be a daily reminder of cancer.  I have asked my doctor about a mastectomy and about a nipple sparing or areola sparing mastectomy but feel that the lumpectomy is the right decision.  How confident am I in that decision?  Not very.  Well, I guess confident enough to schedule the surgery but not confident enough to know without a doubt this is the right decision.  I feel a little vain . . . and if the cancer comes back I will not be eligible to do tissue expanders and implants because if you do a lumpectomy you have to do radiation to get the same survival benefit as a mastectomy.  But I try not to think about the cancer coming back.

Surgery is one week from today, December 4th.

I have had to make a lot of tough decisions lately . . . what surgery to have . . . and what car to get.

Last Chemo - Finally Done with this part of Treatment

My last chemo was on 11/7/12, wohooo!!!!  It was pretty uneventful (yay!).  It hurt a little when Julie got the IV started, but I wasn't complaining cause nothing was going to stop me from getting the last chemo!!!  They rang the bell for me too . . . and I went and rang the bell too :-)  For those of you that don't know, ringing the bell is a tradition at most cancer centers as a way to celebrate being done with chemo.  Those of us going through chemo are easily amused and ringing a bell has much significance as a way to celebrate moving on.  I hate this picture, but here is a picture of me ringing the bell.

Well, later the next day my face got a little red and looking back my face was red in the picture of me ringing the bell.  I also had a really bad headache. I think it was a mild allergic reaction to the chemo.  It took some zyrtec and it improved but later that evening it happened again and cause zyrtec is supposed to only be once every 24 hours I couldn't take another one.  When I noticed my face and chest getting flushed I was also starving so I postponed calling the docs until I ate something.  After eating I got into a fight with DH and it seemed to go away.  I think the endorphins from the fight helped with that.  But it figures it would be just my luck that I have another allergic reaction . . . oh, and looking back I did have a headache about the same time after the last one too :-/.  But none of that matters now cause I am done with chemo, woohooo!!!

Of course when I say I am done with chemo that really means I am done with getting chemo injections.  Chemo is the gift that keeps on giving.  I had the allergic reaction and still have other side effects.  Neuropathy (tingling of my fingers and feet), yucky taste in my mouth where food doesn't taste right, very low white blood cell count, fatigue, getting tired easily, chunks of blood when I blow my nose, heartburn, the 15 pounds I gained during treatment . . . oh joy.  The neuropahy is the one that worries me the most.  I have been having it off and on after most of my Taxol treatments but the weird thing is that I would notice it would show up a few days after chemo, then after the next chemo it would get better.  I mentioned this to my oncologist and she seemed surprised.  I suggested that it may be the decadron (steroid that is given to prevent allergic reaction) and she thought it may be masking it somehow.  Well since I don't have any more chemos I wonder how the neuropathy will be cause the week I had off when I was sick it didn't get better.  And the lack of fingernails and the dryness makes my fingernails pretty sensitive.  But I am done with chemo so I wont complain.

Weekly Taxol Number 7 - 3rd Time is a Charm

How many times does it take to get an IV started?  Three.  Yep, 3 . . . and the first two hurt really badly!  I had this nurse, Christy, for my final AC and I had no issues with that IV.  I suspect my veins are protesting the weekly prodding, but they have not been poked for two weeks since I missed chemo last week.  She started on the side of my wrist, just below my thumb.  I have had the best luck with IV's on the back of my hand but she saw all the scars and thought my wrist might be better.  I did notice on my week off from chemo that the back of my hand was swollen so I didnt protest when she went for my wrist.  Things were going OK and I didnt really suspect there would be an issue.  There is always some pain when an IV is started and by this point I know what is a "normal" amount of pain and too much.  She started the IV and then it felt like the needle was stinging and while I think she was only just barely in, it felt like the needle was 4 inches long.  It was stinging so badly that I was wincing/whining and sitting straight up and on the edge of my seat and I'm sure that my face told the story of how much pain I was in.  She decided to try another spot.  I wasnt thrilled at the thought of being poked again, but it did hurt really bad and I couldnt stand it .  She then tried the vein on my forearm.  I told her before I had got bruising and my vein had leaked there (after my third AC and first couple of Taxol's).  She said she was good at getting the vein there so I gave her the go ahead.  Again, it hurt really badly, probably moreso than the wrist, but I think the forearm is a painful area for an IV in the first place.  She decided to have another nurse try cause she didnt want to hurt me again.  I reaffirmed that she had done it successfully before and I didnt really think it was her fault.  A few days later I had a bad bruise on my forearm (again).  All nurses are officially banned from using that vein.

She got me a heating pad and a warm towel to wrap my arm in - I guess warming the vein is a trick for making them pop out and be easier to get.  I also drank a bottle of water cause being well hydrated helps.  In hindsight I maybe should have drank more water that morning.  I did drink a lot, but the bottle I had did go down really easily so maybe I needed it.  Or maybe my veins were protesting cause they had a week off and wanted to have more time to recuperate.

I dont know if I mentioned it here, but all of my IV's have been on my left arm.  My tumor is on my right side and the Sentinel Node Biopsy (SNB) I had was on the right side.  If you have lymph nodes removed you are at risk for lymphadema, a condition where they lymphatic fluid does not drain properly.  Once you have it, it is a lifelong condition and you need to wear compression garments, etc. My surgeon told me that I am not really at risk cause I only had 3 nodes removed, but better safe than sorrry.  I have noticed that my left arm (non-SNB) has been swollen off and on though this and if that happened on my SNB side I would be worried that it is lymphadema.  Well, I dont want to risk it so I started out having all blood draws, blood pressure and chemo infusions on my non-SNB side.  About halfway though the weekly Taxol's I talked with my surgeon who said I am not at risk for lymphadema.  I did my own research and there is a risk, although much smaller than if I had had all lymph nodes removed (which was standard practice for years and many women still have all nodes removed today).  I decided that I would allow blood draws on my non-SNB side to give my poor left arm a break.  It is still very battered and abused but I think it will hold out for the 2 more chemo's I have left.

Anyway, the other nurse did get the IV started in the back of my hand.  I dont know what she did but somehow she managed to get blood all over my hand.  But at least the IV was in with the "normal" amount of pain.

The rest of the infusion went without issue although I did notice that my mood had changed.  You know how after you cry, you have that kindof exhausted, emotionally spent feeling.  Yeah, I had that.  I went home and parked it on the couch after that, even though I really wanted to go to Costco - something I have been able to do after previous chemo infusions.  I didnt feel bad, just unmotivated to do anything.

Two more chemos to go.  Anticipated PFC (Post Final Chemo, although there is another more colorful version) date is 11/7/12.

I will have my lumpectomy about 3 weeks to a month after that.  I have met with the surgeon and Plastic Surgeon.  Usually lumpectomies do not have any reconstruction, but the PS mentioned that I may have a dimple or divot.  She said that she can do what is called an oncoplastic reduction, basically a breast reduction after removing the cancer.  I am still mulling over if that is what I want.  It is a longer surgery, I would have both of them reduced to match, and if I were ever to get pregnant there is a chance that my "good" breast will not function either.  I cant decide if I would really care if there was a divot/dimple there.  I will have a giant scar and it will look the same with a bra on so I dont know if it is that important or not.  Oh and if I do have the reduction I need to have it done before radiation cause after radiation the skin does not heal as well and my doc wont do it.  So much to think about.  I dont have a surgery date yet, but I need to find out soon.

Chemo Cancelled this week due to my cold :-(

No chemo this week for me :-(  Last week I felt like a cold was starting and I was right - runny nose, sneezing, coughing, chest and nasal congestion, ugh.  I struggled all week with the symptoms and felt like I was getting better on Tuesday but then Wednesday (chemo day) morning I was coughing up a storm.  It was more of a dry cough and my whole body hurts from coughing so much.  Plus it was like 90degrees on Wednesday so the air conditioner was a must . . . but when the air conditioner would kick on I would start coughing although my morning coughing wasnt triggered by the air conditioner.

Since last week they gave me chemo even though I was sick I figured they would this week too, but nope my doc decided to give me antibiotics (augmentin - they are giant horse pills!!!) and have me come back next week.  She was irritated with me since I apparently wasnt answering her questions properly (I dont know what she wanted but I answered her questions).  It was freezing in the waiting room and that triggered some coughing.

Being rejected for chemo is a weird feeling - I mean who really wants to be injected with a poison?  But on the other hand I do want it to work to kill the cancer and I want to be done.  I really really want to be done.  I have been on this chemo roller coaster since May 16th, 2012 and it is an awfully long ride and I am really really REALLY ready to get off.  But no, I have another week added to it, sigh.  Estimated PFC (post final chemo) date is now November 7th!

On a positive note, the horse pill antibiotics seem to be working - my nose is just barely running and my cough is less, but still present.  I am also feeling like I have more energy - not that I am going to be running a marathon or anything, but I feel like I have energy to prepare food, make the bed and do a few things I need to do but kept pushing off cause I had no motivation.  And my tastebuds seem to be back . . . a few days ago everything tasted soapy or bitter or just plain yucky.  But now most things taste as I think they should, yippee.

Oh and I lost another fingernail, sigh.  Maybe I will be able to finish that post with my newfound energy.

Weekly Taxol number 6 - three more to go

A few days before Wednesdays infusion I started having a really stuffy nose.  My nose has been stuffy for awhile and my oncologist told me to use the saline nasal spray.  I had been using that and it was OK, but it seemed to be getting worse even though I was also taking Zyrtec.  Oh, and by the way I have no nose hairs, in case you were wondering.  But I do have a lot of bloody scabs/boogers that get stuck in my nose.  I think that is what is causing the stuffiness.  Yeah, isnt chemo pretty??  Well things seemed to be getting worse, especially at night.  I woke up a couple of times where I couldnt breathe cause my nose was so stuffy.  I also woke up several times because my throat was dry - I could breathe just fine through my mouth.  Well anyway it started to get worse, and was really bad during the day too.  And then my nose started to run.  I didnt have a fever - in fact my thermometers said my temps were in the 97.5 range.

I was worried if I should have chemo or not.  If you recall I got really sick after my first AC chemo and I didnt want to repeat that.  I sent an email to my doctor and the nurse called and said it should be fine as long as i dont have a fever even though I mentioned that I started to get a cough and felt like it is probably a cold and not allergies.  They always take my vitals - blood pressure and temperature when I first arrive.  Oh they do weight too, but that is a whole 'nother story.  My temperature was 98.something when I was in the chair.

I got my least favorite nurse again - the one that has left me bruised after each chemo.  I was too worried about me being sick to really panic about having her as my nurse.  She called my oncologist who confirmed that as long as I dont have a fever I should be OK. Turns out she used my wrist vein and didnt leave a bruise - yay!

Well, ever since chemo I have been blowing my nose regularly and occasionally coughing up a storm.  And I have to sleep propped up or it just gets worse.  The weather has went from hot to rainy and is headed back to hot . . . which I am sure is also compounding the issue.  I just hope the cough goes away soon because I also have a nasty taste in my mouth (common side effect of taxol) and the only way I have found to make it better is to eat frozen fruit bars after a meal and now they just make me cough afterwards (due to the cold).  Oh and I'm not sleeping well either . . . sorry to be such a debbie downer this post but it has been rough.

Oh yeah, my white  blood cells were up a bit, 3.9 (compared to 3.2 last week) but that is still below the normal range and the decadron(steroids) and chemo they gave me have lowered them further from there . . . no wonder I am struggling.  But if this is a cold, hopefully my immune system will kick it into high gear and the whites will be up again when I have them tested on Wednesday, but who knows.  I am being super careful and following the guidelines for preventing neutropenia cause one trip to the ER was more than enough for me.

Chemopause

Weekly Taxol Number 5

Taxol infusion number 5 went ok.  Being there every week is starting to get old.  This week I was given Chair Number 1, wohoo.  Not that there is anything special about it - it does have a window which was nice, but it is just about the same as all the other rooms.

See, I told you - it prettymuch looks like the other cell, I mean "room".

My counts have been steadily drifting downward :-(  My White Blood Cells (WBC's) were 8.4 after my first taxol and are going down every week, 5.8, 4.2, 3.9 and 3.2.  The Normal range is 4-11 so you can see the last two weeks my numbers have been below the "normal".  Low white cells are expected as chemo and the decadron (steroid I get before chemo to prevent allergic reactions) both are immunosupressive (big word for weakens the immune system).  I know the docs care more about the ANC, absolute neutrophil count which is calculated if you take the percent of neutrophils times the total white blood cells.  Before this infusion, my ANC was 1.6 (my neutrophils were 50% of my total WBC's so 50% of 3.2 is 1.6) which is on the low end, I am not sure what the cutoff is.  I have spent the week trying to take it easy and boost my immune system any way I can but I do have a little cough and my nose is very dry and stuffy.  I have been trying to eat well, rest, I even drank a little green tea, met a friend for lunch (boosted my spirits and made me feel normal for a bit) and after trying to do it for the longest time, I finally went for a walk.  It was a short walk, only 23 minutes but exercise helps the immune system so I plan on exercising regularly.  And I am making some chicken soup today :-)

And I lost another nail . . . I'm still working on a post about that.

Taxol 4 of 9

Prior to my Taxol infusion yesterday I had bloodwork done, including ALT, a liver enzyme.  My results were 119 and the upper limit of the specification was 54.  Last time it was checked was on September 4th and it was 60.  I though 60 was a little high, but just barely and since chemo can do some weird things to your bloodwork I didn't think too much of it . . . ok, I worried a little but forgot to ask the doctor about it (I blame chemo-brain).  But now that my results were more than 2x the upper limit I wanted to know what the doctor said.  I sent her an email but did not get a response prior to chemo.  But the nurse was paging her and I specifically asked her to ask about that.  She said that it is high and the doctor will monitor it. Next week when I go in for my routine CBC bloodwork I will also be getting the liver panel.  I also have an appointment with my oncologist on Monday so I can get further clarification.  My google search tells me that they don't really worry about your ALT unless it is 5x the upper limit while on chemo but I will be asking more questions during my appointment.

The actual infusion was pretty uneventful except it lasted longer than normal.  I am not sure if this is because the nurse set it to go slower or if there was more volume.  My DH thought that the bag was bigger so I will also ask the doctor if she had them mix it more dilute or infuse over a longer time.

I had a nurse that I haven't had before and I think she is my new favorite.  Plus I also got a room with a window.  I say "room" but they are more like cubbyholes, but I was excited for the window even though the window was behind me and I couldn't look out (not much of a view anyway) but having natural light just seemed to make the place less industrial.  Here is a picture of my room with a view.

As far as side effects go, so far they are the same as previous ones, decadron steroid high and flushed face, muscle aches (like I just started exercising after a long break), fatigue, and my fingernails looking like they are about to fall off (I'm working on a separate blog post for this with pictures - if you are brave enough to look at them)

Good Cancer Quote

A friend shared this with me and I thought it was too good not to share.

Third Weekly Taxol

My third weekly taxol infusion was pretty uneventful.  I was hoping not to get my least favorite nurse and got lucky and got my favorite nurse.  But sadly, I still ended up with a bruise where the IV went in.  So now I am at a loss . . . maybe I am just destined to have a bruise after each infusion.  With six chemo's left I sure hope that is not the case.

My fingernails have taken a beating during chemo - on AC, my nails had lines on them, now the lines are fading and it looks like the nail is pulling away from the nail bed.  I have trimmed my nails so they are as short as possible and not using my nails for anything.  I also noticed that on my right hand where the nail is just growing looks whitish . . . I'll post some pictures later, but I am not liking the direction things are going.  Plus I have some neuropathy on my fingertips which means that they get numb and tingly and when I touch things it doesn't feel right, like how things feel when they are numb.  This feeling comes and goes and I have noticed that I am a lot more clumsy which I am sure is a side effect of the neuropathy.  I have taken some vitamin B6 and glutamine off and on to help with this.

And my hot flashes, although really mild, seem to be happening more frequently.  I also have more hot flashes on chemo days, which are now once a week.  It could also be that it is hot - I am ready for cooler fall weather.

I also still have muscle aches, primarily in my legs.  It makes climbing the 3 flights of stairs to my place difficult, but not impossible.  I feel sore, like I ran 5 miles yesterday.

I also had an appointment with the surgeon to discuss my lumpectomy.  It looks like that will be somewhere around Thanksgiving and will probably be the week after.  I have an appointment with the plastic surgeon too and will finalize the date after that.

Chemo Hair Loss Silver Lining - Top 10 Reasons to Like Being Bald

In my best David Letterman Impersonation

Drumroll Please . . .

Top 10 Good Things About Loosing Your Hair to Chemo


10.  Showers go much quicker since there is no hair to wash/condition/dry.

9.  Save the earth by not using a blowdryer.

8. Hair doesn't get caught in your necklace.

7. If you are cold, just put a hat or scarf on for instant warmth.  If you are warm, take off the scarf or wig for an instant cooldown.

6. No hair to clean up on the bathroom floor or in the shower drain.

5. No hair in your face.

4.  No hair in your food.

3. End the curiosity of what your scalp looks like.

2. No hair "spiders" from the dryer - ladies know what I'm talking about, the clumps of hair that somehow find each other in the washer/dryer and look like spiders when they fall on the floor.

1.  Save money on shampoo and other hair products.


Just trying to put a little silver lining/ comic relief into a not so fun situation.  The way I see it is that you can either laugh or cry, and well I have done plenty of crying lately so it is time to try laughing.  I would looovveee to have my hair back, or to never have lost it in the first place.  BUT, it will grow back after treatment is done.  For most people the growth rate is about a half inch a month!  Yeah, it grows back but at a glacial pace.

Breast Cancer 101

Cancer is cancer, right?  The only difference is where it is found, right?  WRONG.  Each cancer is different, and each breast cancer is different.  Don't worry, I was clueless before I had to get educated ASAP.

Here are a few things I have learned about Breast Cancer, in laypersons terms.

Hormone Receptor Status - Hormone receptors are proteins on the breast/tumor that receive signals from the breast(or tumor) to grow.  The two hormones are Estrogen and Progesterone.  Commonly abbreviated as ER+ or ER- and PR+ or PR-.  The pathology report of the tumor, usually from a Biopsy or from surgery will indicate the hormone receptor status.  Basically it tells you if Estrogen or Progesterone "feeds" the cancer or not.

ER+ tumors - There are drugs, Tamoxifen or Aromatase Inhibitors that will block your natural estrogen production.  These are usually taken for 5 to 10 years (yeah, I said YEARS) after your treatment to prevent recurrence.  Tamoxifen has been around for years and was initially given for 10 years.  Further studies showed that 5 years was just as effective.  I believe there are current studies going on to see if 2 years are just as effective.  Aromatase Inhibitors are a similar type of drug as Tamoxifen but are given to postmenopausal women.  Tamoxifen is now just given to premenapausal women although prior to armotase inhibitors it was given to all women regardless of their menapausal state.

There are no known drugs to take to reduce the recurrence of ER- or PR+or- tumors.

The following is a breakdown of the frequency of the hormone receptor status of tumors, from breastcancer.org

• ER+: About 80% of breast cancers are estrogen-receptor positive.
• ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
• ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
• ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors. More research is needed to better understand progesterone-receptor-positive breast cancers.
• ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.

Human Epidermal growth factor Receptor 2 Status

This is a little more difficult to describe, but I will try anyway.  My understanding of HER2 is that it is a known "feeder" of breast cancer cells and that it tends to be more aggressive than HER2- breast cancer.  Prognosis used to be worse for the 25% of patients that had the HER 2 mutation.  Herceptin (Trastuzumab)
 a new drug that is helping save several lives.  It is referred to as a targeted therapy as it is a monoclonal antibody that is specifically targeted to the HER2 protein.

Here is an excerpt from breastcancer.org.  

The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way.

Breast cancers with HER2 gene amplification or HER2 protein overexpression are called HER2-positive in the pathology report. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers. But there are medicines specifically for HER2-positive breast cancers.

Summary
There are 3 main ways to classify a breast cancer tumor, ER status, PR Status and HER2 Status.  HER2 positive is generally aggressive, as are tumors that are negative for all, called triple negative.

Treatment is based on the ER, PR and HER2 status of your tumor.  ER+ can be given an estrogen blocking drug such as Tamoxifen or an Aromatase Inhibitor.  HER2+ can be given Herceptin, a recent targeted therapy.

Disclaimer - I am not a doctor so please consult your doctor.  I am just trying to explain my understanding of things in a clear and concise manner.

Taxol Infusion Number 2

I was worried about infusion number two of Taxol because it was my second infusion of Taxotere where I had the bad allergic reaction.  But I tried not to think about it cause worrying does no good.

I got called in to the infusion center and found out I again had my least favorite nurse.  Why is she my least favorite you ask?  Because the IV always hurts more when she does it than when any of the other nurses have done it.  Plus she was my nurse when I had the pain in the infusion site after only getting saline and I ended up crying during the adriamycin push.  She is very nice and I don't think she is doing anything to purposefully hurt me, but she does.  I think it has to be a slight difference in her technique.

She was eyeing my forearm vein again but I asked her to go for the hand.  She did go for the hand, but said that "the vein was not happy to see me" and that she couldn't get it (later I saw she tried in almost the exact same spot as last week - um, couldn't you have went a few millimeters away?)  Well, she went for the forearm vein that she was initially looking at.  It hurt, but not as much as my hand was now hurting.  She was nice and went slow on the infusion to help me with my allergic reaction fears, which was nice.  The infusion went without incident.  It was quite boring in fact.  I was so bored that I took a picture from my chair.

I told you it was boring. 

When I got home and took the bandage off my arm I noticed I again had a bruise,sigh.  Now I have 2 bruises, one on my hand where she couldn't get the IV and one on my forearm.

See the bruise below my index finger.  The scars on my wrist are from  prior infusions - the left one was from adriamycin and the right one from taxotere.  I'm not sure about the reddish/brown discoloration on the upper arm (farthest down in this picture).  It doesnt hurt and seems like it is slowly going away - it showed up about the same time as the shingles so who knows.

I hope that next week I get another nurse, but if I get her again I will definitely say something.  I think my bruises will still be there and I will use that to start the conversation.  And if it turns out that I am assigned to her for the duration of my treatment (when I got AC it seemed like I was randomly assigned a nurse but so far 2 weeks in a row I have had my least favorite nurse so it seems like it is not a coincidence) I will call and ask for my favorite nurse, or at least another nurse that I don't end up with bruises - my left arm is beat up enough, I don't need to suffer any more than I have to.

So far the side effects have been mild, although I am now having some nasal congestion.  I am taking zyrtec and it seems to help a little.

Taxotere to Weekly Taxol - Change of Plans in my Chemo Treatment

Two weeks ago I had an allergic reaction to Taxotere.  My bloodwork prior to the treatment showed that I had high eosinophils.  According to the doctor eosinophils are high due to an allergic reaction.  I had noticed that my eyes were puffy, and I was cleaning out some stuff and exposed to a lot of dust (and stress, but that is another story).  Well, last week I had blood drawn in preparation for my chemo on wednesday and I also had high eosinophils . . . even higher than last week!!!  WTHeck is going on??  My oncologist called me on Tuesday to tell me my results.  She also thought that since Taxotere has been really harsh on me that I should be switched to weekly Taxol.  I was relieved as I was really fearing going back in and having a repeat reaction to taxotere.  And by really fearing it, I mean I was dreading it with all I have left right now.  I even sent her an email asking her for specifics on how/what will be done to ensure I dont have the same reaction again.

So needless to say I was very relieved to be told I would get weekly Taxol.  Until the fear of having a reaction to Taxol (which is like a cousin to Taxotere, both are in the taxane family of chemotherapy drugs and are derived from the same Pacific Yew Tree, Taxus brevifolia ) set in.  I told the nurse that I had a reaction to taxotere and that this was my first time with Taxol so please go slow.  She obliged, although she is not my favorite chemo nurse.  Remember a few weeks ago when I had my last AC infusion and my vein leaked and I ended up crying during the whole infusion?  Same nurse.  I was less than thrilled.  She looked for the same arm vein and I told her that I had it leak and to please use my hand.  She used my hand but it hurt!  She was kinda snippy and said that is why I dont like using the hand cause it hurts.  But none of my other ones hurt - to be honest it only hurts when she does it.  She is really nice and actually shows me the drugs before she hooks them up (after another nurse verifies she has the right chemo for me), but so far she is 0 for 2.  At least I didnt have an allergic reaction this time.

I did get IV premeds - decadron, benadryl and pepcid.  The benadryl hurt going in and gave me restless legs, so I ran a "mini-marathon" in place in my recliner.  My legs had so much pent up energy I wanted to run, and my nurse said some people walk around, I didnt really want to drag my IV setup with me.  I'll do it to go to the restroom, but I didnt really want to tote it around just to walk.  But my marathon in place worked until I started to get drowsy.  At least she told me if I take Zyrtec an hour before my next infusion I dont need the benadryl IV.  Yippe, one less painful drug and less time in "the chair".

Aside from a hurting hand where the IV was placed I was fine during the infusion.  I went home and was ok. On Friday I started to feel kindof out of it and without motivation to do anything (lazy).  Saturday and Sunday my legs felt like I had run a real marathon.  I didnt take anything but did spend a lot of time on the couch which may have hurt the situation as I always felt more stiff after I had been sitting for awhile.  But it was manageable - I know people who have way worse bone pain than I do, so I'm not complaining  And of course I had my usual sensitivity to acidic foods and heartburn, but aside from that I am doing OK.

Now I'm worried about my eosinophils and what is causing them.  The doc seems to think it is allergies as I did have a sinus headache that seemed to get better when I took Zyrtec, but only my next bloodwork will tell the true story.  Oh and I am also worried about having a reaction to my second Taxol because it was my second Taxotere that had a reaction.  My oncologist acted like I was crazy when I told her my worries.  She has me convinced that more people have a reaction with Taxotere and it is really really REALLY uncommon to have a reaction to Taxol.

Never fear growing old, there are many who never had the privilege.

Happy Birthday to Me!  

Never fear growing old, there are many who never had the privilege.  That is my new mantra.  Prior to BC I was dreading my birthdays as I turned 39 today which means that next year I will be the dreaded 4-0.  But now that things have changed and I have a new perspective I appreciate each birthday more.  And I hope to have at least 39 more birthdays!

Feeling Better, Finally

I realize that most of my posts have been negative and that is in part because when I do start to feel good I am too busy catching up on all the things I put off when I wasnt feeling good.  Even making dinner and cleaning up are suddenly more enjoyable.

Anyway, I wanted to post saying that I feel somewhat normal again.  I am still nowhere near a pre-chemo normal feeling, but when you have hit rock bottom even feeling halfway decent feels sooo good.  I was able to go for a 20 minute walk today[this was supposed to be posted on Saturday when I wrote it], sit on the couch and browse through pinterest my new favorite passtime, as well as make some dinner.  And DH cleaned the house - that alone is enough to make a girl feel better :-).

I still have to talk with my oncologist to discuss how a reaction will be avoided next time.  And I have to find the courage to go back and subject myself to the torture that is chemo, but I know the "torture" is for the best but it is a little scarier after my reaction.

Allergic Reaction to Taxotere

Today was my second round of Taxotere . . . and I had an allergic reaction :-(  despite not having an issue with the first round.

Yesterday I had routine bloodwork including a CBC with differential.  My oncologist called me because my eosinophils were high.  She said this usually happens due to allergies.  She asked if I have had any allergies lately.  I usually do not suffer from allergies, but I was moving some stuff around and exposed to a lot of dust in the last few days.  I was wearing a mask, but I thought that may have been the answer.  I did wake up to some puffy eyes on Monday too.  She thought we would be OK to continue with chemo.

When I arrived for chemo, the nurses commented that my face was red.  This is a comment I have got at most of my doctors/chemo appointments.  I have roseacea and fair skin so I do get red easily.  And the decadron that I took yesterday and this morning can also cause redness as it is a steroid.

Things started out OK despite a leaky filter that caused my IV to drip - but this was caught during the saline infusion.  The taxotere was then started.  A couple of minutes into it I started to get a little nauseous and feel really hungry - something that happened during round 1.  Then I got a really big pressure headache that moved on to feeling like my head was going to explode.  At this point I told my dh that I was feeling weird.  Then when my upper lip started to feel like it was getting bigger and I could feel my heartbeat in my lip I told my DH to get the nurses.  Two of them came directly to my aid.  One gave me oxygen while the other gave me some medicine and told me I would start to feel better right away.  She was right, but I dont know what was in there(I have to find out).  They also took my blood pressure and pulse which were both up.  They also gave me some benadryl and more saline.  They then kept me for observation for like 30-45minutes.  I was feeling better, but they were concerned.  I had to use the restroom and at first they wanted my dh to go with me, but I assured her that I felt fine.  She was concerned that I might get weak, but deep down I knew I was ok.  I compromised by telling her that I would walk slow.  And I was OK, just as I thought.

The nurse called my oncologist and she wanted to stop treatment today and try again next week.  I have to go in for a CBC on tuesday and will have chemo on Wednesday if my numbers are good.  This will delay all future treatments by 1 week meaning I will not be done until October 17th, sigh it seems so far away.  But it is better to wait than have another allergic reaction.

I was hungry, just like after round 1 . . .I went home and ate and took a nap.  I was then woken up by a small earthquake, magnitude 4.1.  I was not able to fall back asleep after that, but I hope that means I will be able to sleep at bedtime.

My face is a little red and I feel tired, out of it, and like I just cried or had an emotional reaction.

I have to give kudos to my nurses who were very quick to respond and took good care of me.  Even though it was incredibly scary and could have been disastrous I felt that I was in good hands and that they would take care of me and I'm thankful that things turned out OK, for the most part.

Buh Bye Neutropenia, Thanks Neupogen

I went in on Monday for bloodwork to make sure my WBC's were coming up.  I got a few results:

WBC's - 39 (normal is 4-11)  I really responded to the Neupogen and personally feel I would have done OK with just one or two shots.
ANC - 28,000
Platelets - 177
Hemoglobin - 10.9

ANC is Absolute Neutrophil Count and is a measure of the Neutrophils that are one of the 5 components of White Blood Cells.  This is really high and should be since the Neupogen is to raise the neutrophils.

Platelets are a little low, but I believe I read that they start out from the same cells that make WBC's so that kinda makes sense (WBC's are hogging the cells?)  No scientific evidence behind this thought, just one of my crazy theories.

Hemoglobin is low.  I have been suffering the effects of the antibiotics so I'm sure the food has not had enough time to absorb all of the iron.  But I did have a burger last night.  I really want to get this up before it gets out of hand.  Some other people have had to have transfusions cause their hemoglobin was low and I really do not want a transfusion.

Oh and I also feel better, Yippee.  Not feel better like how I felt before I had cancer or chemo, but feel better compared to how I felt last week better.  Perspective is everything.  I cant wait to feel better for real, but I will take the small victories.

Taxotere - Round 1 Information

Taxotere is, well, TAXing.  That is my experience, but it didnt start out that way.  This is my first expereince with taxotere and everyone has been telling me it is so much better than AC chemo.  I was a little sceptical, but wanted to believe.  The first couple of days I did feel great.  I felt almost back to normal for those first couple of days . . . I was thinking that everyone who said it was easier was right.  I didnt have the "hangover" feeling like I did from AC.  I also seemed to have a clearer head and was able to get some things done, something that was unthinkable on AC chemo.

The day prior to taxotere infusion I took 16mg of decadron, a steroid used to prevent an allergic reaction that can occur (but also suppresses your immune system).  Then on day 1 I took another 16mg and on day 3 I took 8mg.  I was warned that I would not sleep well, if at all on those days, but I was pleasantly surprised when I did sleep well enough.  It wasnt the best sleep but I did feel it was enough to refresh me and keep me going the next day.  Wohoo I am not even getting that bad of symptoms.

That all changed on the morning of day 4.  I woke up and felt very stiff and as the morning progressed my joints started hurting, particularly my ankles, hips and knees.  I was lying on the couch in incredible pain.  Thankfully the PA had told me that I could take my leftover tylenol with codiene, which after some fretting and debating I did take.  And I was so thankful for those meds.  I thought once I started that I would be popping them left and right in and out of consciousness being loopy as I go in and out of consciousness.  Surprisingly I took very few and was very clearheaded.  I did take a few naps and lay on the couch, but pain is exhausting.  Day 4 and 5 were spent on the couch as much as possible and popping pain pills.  When the pain meds wore off my muscles felt like I had just run a marathon.

During this time I was having a weird taste in my mouth and no food tasted good.  I struggled with eating.  things had a weird creamy/bitter texture to them.  I was forcing myself to eat, but not enjoying it at all.  I also started to develop a weird itchy rash.  I struggled with these for a little bit, but then went to urgent care and got my triple diagnosis . . . Oral Thrush, Shingles and Neutropenia.
Oral Thrush is a common side effect of chemo.  Thrush is an overgrowth of a fungus that is naturally occurring in your mouth anyway.  If you have a "normal" immune system you do not need to worry about it, but if your immune system is compromised due to chemo (or other factors) you are more susceptible to it.    Here is some more technical information on thrush.

Thrush looks like a whitish film all over the tongue.  It is not painful, but I was having a feeling of a hairy tongue and dry mouth and all foods were tasting horrible.  I am now taking clotrimazole troches 5x/day.  A troche is a dissolvable flat tablet?  The size and shape is kindof like some chewable vitamin C things I had a few years ago, but you are not to chew them but rather let them dissolve slowly in your mouth.  I noticed improvement within hours of taking the first dose and while it is hard to take them five times a day it is worth it.  I have to take them for 10 days.  They don't really have a taste, but if I don't spread the dosages out enough I do notice my tongue starts to feel a little raw.  But it is better than thrush.

Shingles

Shingles are not just the tiles on your roof, but a rash that develops if you have been exposed to the chicken pox virus.  I had the chicken pox when I was 16.  After my body fought that off some of the virus remained in my body in the dormant or inactive state.  Then as a result of a weakened immune system and likely stress the virus became active but in the nerves.  The end result is a nasty rash.  The internet says most are painful, but mine has been more itchy and if I scratch it I notice the pain and burning.

I was given Acyclovir to take 5 x/day for 10 days.  These pills are kinda large, but manageable.  The itching has subsided . . . it is a catch 22 - I find the less I scratch the less itchy it becomes, but let me tell you how hard it is to not scratch.  I have been taking the medicine, but I do notice I have been also scratching my collarbone and I hope that is not another outbreak.  Trying not to scratch.

Neutropenia

Neutropenia is a low white blood cell count.  But there are several components to your white blood cells and a change in each of them is indicative of different things.  The doc told me my white blood cell count (wbc) was 1, which is low, but not expected as the day I was tested was day 7 and on taxotere that is the nadir, or low point.  She also mentioned something about my basophils being high because it was fighting off the fungal infection, but I also think my ANC (absolute netrophil count) was low too.  I was lucky enough to be in a room across the hall from the doctors station and could hear the urgent care doc on the phone with the oncologist through the thin doors.  Im sure she would have told me this stuff but she was already giving me so much info already that the extra info ahead of time was helpful.  I was told that someone would contact me about getting neupogen injections and when I got that call they mentioned I had grade 4 neutropenia.  While I am not happy about this, I am happy that my numbers were high enough to avoid hospitalization.

To help my white cells fight off all of these infections I was told I needed 4 days of neupogen shots.  Since I am not comfortable with giving them myself I am going in to the nurse clinic for them to do it for me.

I had the first neupogen shot on Wednedsay morning and feel Ok.  There was a little pain at the injection site but I was told to take the medicine out of the fridge and let it warm to room temp before injection to avoid this.  I have noticed I get bad backaches a couple of hours after the injection.  Thank goodness for leftover pain meds.

I am feeling a little better since getting the shot, but now I have the mouth sore from you know where and a sore/inflamed/partially blocked throat that makes it incredibly difficult to swallow.  It hurts to swallow water but less so if I take baby sips (which means it is hard to drink enough during the day) and eating is downright painful, even after applying some local anasthetic to the mouth sore (which makes eating enough difficult).  At this point I think I would like a feeding tube, but I believe these will improve in a day or two so maybe I can make it through.  Update: I wrote that a few days ago and the mouth sore is still bothering me but is better.  I am still not eating enough (cause it still hurts) but I am gradually eating more every day.

So I have a bunch of pills to take . . . 14 to be exact.  The antibiotic is supposed to be taken 4 times a day on an empty stomach (1 hour before eating or 2-3 hours after), the shingles medication says it may be taken with food to reduce the chance of upset stomach so I have been taking that with food.  And the thrush medication is to be dissolved in the mouth.  I have been trying to do that after eating so as to have the best benefit.  I have a little log sheet of all my pills, when they should be taken and I mark down when I take them, sigh.  It is exhausting just keeping track of them and trying to coordinate taking them at the right time since I am also eating more frequent small meals due to the pain while eating.

All in all I have had better weeks . . . but I am starting to feel halfway human again after being glued to the couch all week.

Cancer sucks.

Last AC Chemo - Not Going to Miss the Red Devil

I dont wanna go, I dont wanna go.  I felt like a 3 year old having a temper tantrum.  I wasnt crying . . . yet.  The morning of chemo is not a fun one.  I know what is in store for me - I will get drugs that will save my life but in the process will make me feel horrible.  Mental preparation is tough, especially because the cruelty of the situation is that you feel the best right before the next chemo.  I was just starting to feel somewhat ok and didn't want to feel bad again.  Waah waah.

The last round was the hardest one and was much harder than the previous ones (although none were what I would call easy).  I really felt like I was ranover by a truck last time and they say there is a cumulative effect and that it gets worse each time.  That is what caused me to be so nervous about this one as I thought it would be worse than last time and I wasn't sure I could handle it.

I begrudgingly went to my appointment with my oncologist that was scheduled right before chemo.  The whole way there I barely said a word.  I checked in and got my ID bracelet(yeah, like the ones they give you when you check in the hospital).  I then had a relatively good appointment with the oncologist.  She was very rushed and when I told her about my side effects she quickly offered me more prescriptions.  By this time I managed to find my big girl pants and was feeling better about going next door to chemo.  I was feeling at peace with being there once I sat down in the chair.  I still didnt want to be there, but accepted that it was in my best interest to just get it over with.  The nurse Jenny got me all situated.  She started the IV line and started giving me saline.  Then we waited.  And waited.  and waited.  Time manages to go go slower when you are waiting for torture to begin, but I was in the chair for an hour and a half and all I had was saline.  I was starting to get hungry too.  I wanted to get this show on the road so I could go eat.

Then, just as Jenny came back with my bag of drugs I started to have pain near my IV injection site.  Yeah, I said near.  It was a weird pain - not at the injection site, but rater an inch or so away.  Jenny then tried to figure out what was going on but everything looked in order.  It did hurt and she asked if she should move it, but I wasnt sure if I would have the same issue in a different location.  I also knew that if it was to be moved it had to be done now - before the vesiccant (adriamycin) gets started.  After some stress over what the right decision is, I decided to ask her to try another location.  The probelmatic area was on my forearm.  She then tried near my wrist.  And missed.  At this moment all the emotions f the day just came flooding out . . . in the form of tears.  I didnt want to be there, the first IV hurt, the nurse couldnt get the second one, in addiiton I had been in the chair for 2 hours at this point.  She eventually got a line on the back of my hand, but I was still crying.  And I didnt stop until she was done pushing the adriamycin which took 30 minutes.  The crying was the tears rolling down my cheek kind not the sobbing uncontrollably kind, but still I was doing it for 30 minutes.  I did start to feel better after getting it all out.  Someone once told me that sometimes the chemo has to come out through your tears.

After I went home and ate I did feel better.  Surprisingly this round has been easier on the side effects than last time.  It still isn't anything I would wish on my worst enemy.

ETA - FYI "Red Devil" is the slang name given to Adriamycin.  I dont know exactly how it was given the name, but here are my thoughts: The chemo comes in giant syringes and is a red color - almost like Cherry Kool Aid color.  Most of the other chemo solutions I have seen are clear or have just a slight yellowish color (or maybe that is just the bag).  The devil part is because it makes you feel so bad, really bad.

Taxotere is next for me . . . and it is *supposed* to be easier . . . I sure hope so!

Chemo Hair Loss

Hair.  You don't realize how important it is until it is gone.  It is one of the first things people see when they look at you, it defines us in a way.  I have had long hair most of my life too.

Hair loss occurs about 12-17 days after the first AC chemo infusion, occasionally longer.  For me it was day 12.  I had long hair - well past shoulder length.  I have always been a "shedder" and constantly lose several hairs a day.  But on day 12 I took a shower and noticed I was losing way more than normal.  I made a little "shower art" as I pasted the loose strands on the shower wall to avoid having it get stuck in the drain.  After this shower I knew it was time. I chose to let my hair air dry as I went to the grocery store.  While at the grocery store it kept falling out, crazy amounts were falling out and I didn't want to start pulling them as I did not know what to do with them.  I made it home and with the help of my hubby and we prepared my hair to be donated.  Below is a picture that was taken just before the cutting began.

My hair - photo was taken right before it was chopped off.  If you look closely at the bottom you can see some loose strands that were falling out.

When I found out I would have chemo that would cause my hair to fall out (not all of them do), I knew immediately that I had to donate it.  In addition to helping a child with cancer (I am struggling and have no idea how the kiddos do it) it gave me a good feeling - like I was recycling or using my misfortune to make someone else happy.  I just didn't want my hair to go to waste.  Cancer can attack my body, but it cannot stop me from helping someone else.  I chose to send it to Locks of Love, but if you search there are a ton of places out there that will take hair donations.  I didnt measure it, but I estimate that the longest strands were about 16-18 inches?  Below is a picture of the hair once it was cut.  You have to put it in a ponytail in order to donate and mine was put into several to be able to send as much as possible since I was shaving it off.

Wow, how long was my hair!!  It will grow back, but at a rate of 1/2 inch per month.

Sent it all off to Locks of Love.  I hope someone can benefit from my loss.

After  all the ponytails were chopped off my hubby took the razor and made everything even - at about 1/4inch.  I was told that it is easier on the scalp and is less itchy if you leave it really really short as opposed to having it completely shaved off.

A few days after I got my super short 'do I was in the shower and when I washed my hair it was coming out in bucketfuls.  Every time I would rub my head I got a handful of little hairs.  I kept doing this until they didnt come out anymore.  All in all, I still have a few hairs - maybe 1% of my original hairs, but still a few that are holding out.  I dont know if those will eventually fall out too, but it doesnt matter either way - actually it may be better if they all fall out.

What is it like having no hair??  Weird.  My head gets cold.  But showers are so much faster and no need to blowdry.   I have a wig that sorta kinda looks like my old hair - well at least it is as long as it was.  I am still getting used to the pre-styled look as it has way more body than my real hair did and to me it makes my head look big.  When I am at home I usually dont wear anything - I did get some hats to keep my head from getting too cold, particularly while I sleep.  When I go out I wear the wig.  I am still working on what I do when I go for my walks.  I have been trying to walk 20-30 minutes a day.  I have a wide-brimmed hat that I wear without my wig (dont want to get it all sweaty), but it looks painfully obvious to me that I have no hair underneath.  They do sell wigs that are designed to be worn under a hat - I need to get one so I have more confidence during my walks.  I saw my neighbor who I dont talk to, but who has seen me and knows I have a lot of long hair, during one of my walks and she gave me the Pity Look . . . the pity look is the worst thing you can do - dont give us that horrified, scared, sad look.  I would prefer you look away than give me the pity look.

I was having writers block on this post and since then I have got a hair topper - basically a wig that is designed to be worn under a hat.  There is far less hair and there is none on the top.  I got mine from headcovers.com and it is much cooler and easier to wear under my hat for my walk.  I just have to remember to put sunscreen on the top of my head.  Overall I am more photosensitive (burn easier) because of the chemo, but also my head is used to being covered with hair to protect it from the sun.  I also have a solid wig cap that works too.  I order a lot of stuff from the internet and what I liked best about headcovers is that they wrapped all of my items in tissue paper and put a pink ribbon and sticker on them.  It was almost like I was receiving a gift . . . even though I know I paid for it myself.  Nice touch.

Eyelashes and Eyebrows also fall out for most people.  I have noticed that almost every morning I wake up and find an eyelash/eyebrow on my cheek.  Sometimes I find an eyelash in my eye.  I have noticed that both the eyelashes and eyebrows tend to flip the wrong direction before they fall out.  For the eyelashes this means that they turn so that they are poking me in the eye.  I have noticed that my eyebrows are much thinner than before.  The eyelashes on my bottom right eyelid are the ones that are coming out first, but the rest are following suit.  I can't say I am excited to be losing my eyelashes/brows.  I need to learn how to put makeup on . . . time for a Look Good Feel Better class.

AC Chemo Story of round 3

In the days leading up to round 3 I was feeling good - really good, probably the best I have felt since chemo started.  I felt so good that I didn't want to go get chemo again and had a couple of breakdowns in the days leading up to it.  How do you prepare for torture?  How do you knowingly prepare yourself to be given stuff that will make you feel like you have a week long hangover?  It isn't exactly like a hangover, but that is the closest thing I can think of to describe what it is is like.  Well the answer is you find a way, it is hard, but knowing that this "hangover" is working to make you better is the motivation.  But it is still hard.  Really hard.

I prepared for this chemo by drinking lots of water and trying to eat high protein and high fiber foods.  I also was walking 30 minutes a day on most days prior.  I even walked 30 minutes on the morning of chemo. This infusion was done by another nurse - so far 3 infusions, 3 different nurses.  I went in the day before chemo to have my blood drawn - and the phlebotomist missed on the first try - so lucky me I now have 2 needle sticks . . . my poor left arm looks like I am a druggie, sigh.  I asked about my wbc's and they were on target at 6.9 (4-11 is the expected range).  During an appointment with the physicians assistant she gave me a printout of some of my test results - on a sheet that compared prior results.  I learned that my wbc's were high prior to my first infusion . . . which in hindsight was a clue that I was getting sick.  Now I am going to ask for my numbers prior to my infusion.  I do get a lot of test results via the electronic system, but my wbcs are not one that I can see on there.

The infusion went without much incident, except while she was trying to clear a bubble I saw her suck up some blood into the iv tube . . . not a big deal, just remember I am such a chicken that I cannot watch the adriamycin infusion where she has to inject some then suck up some blood to make sure that she is still in the vein (cause if it escapes the vein it can cause some major havoc on the surrounding tissue).  I actually have a video that my hubby took of the first infusion that I will post eventually, but in the name of quality control I have to watch it first before I post it here and I will do that after I am done with the adriamycin.

I dont have the pain that I had after infusion #2 . . . I had been making sure that my left arm was not asleep - I was keeping it warm, moving it and not using it to hold up my phone when I am playing around with it.  In hindsight that was something I had noticed that my left arm was falling asleep before when I was playing with my phone.  But I think the root cause is the nerve damage I did 15-20 years ago when I hit my "funny bone" really really really hard.  I do periodically have issues, it is just bad timing to have these issues.  But when it rains it pours.

I was starving after chemo was done which I took as a good sign.  I went home and ate . . . and maybe ate a little too much because I felt bloated.  Then nauseous.  I took one of my back up anti-nausea meds and eventually felt better, but I didnt really sleep at all and I was swollen more than normal and in general felt really bad.  I was also hungry but couldn't eat/nothing seemed palatable.  I managed to choke down some saltines, but they tasted horrible.  I didnt have much appetite and spent the day resting but I was out of it.  I did slowly start to feel better and by day 2(the day after chemo) I was starting to feel halfway normal again, but still feeling bloated, burpy and icky and dry - I was like the desert I would drink water but my mouth still felt dry and my skin I woke up on day 2 with my face almost peeling because it was so dry.

Last time on day 4 after chemo I had the most horrible sour/acidic stomach you can ever imagine.  I told the docs and they gave me some pepcid to take and said i should start on day 1 to help with that.  I have also been avoiding most acidic food and drinks which I think has also helped.  Well I stopped taking the pepcid on day 3 as I thought that was the cause of my dryness.  The dryness has improved, but im not sure if it was the pepcid or not.  My stomach was a little off on day 4, but I ate a lot of potatoes, one of the least acidic foods but it is also hard because my mouth felt so dry that I had to make sure and eat food with some moisture.  All of these restrictions make it hard to eat anything.   I am thankful that this is only temporary, but I have a great deal of empathy for people who suffer from eating issues on a routine basis.  On a positive note I did find Biotene Toothpaste, mouthwash and mouth spray.  These are products that are designed for people with dry mouth.  I used the mouthwash after round 2 and it helped a lot.  I then bought the toothpaste and started using it this round.  Then the other day I found the mouth spray.  It really helped when my mouth was dry and my tongue felt hairy.

It is embarassing to talk about, but lets just say that the dryness I was experiencing also affected other bodily functions.  I'm talking about constipation.   I'll spare you the details, but lets just say I have never experienced anything close to it being this bad, not even in college when my diet was horrible.  This is a  known side effect of chemo and so far I have been lucky to avoid it.  I have been good about eating high fiber foods, but this time it did not work.  I think the dryness I was experiencing was a major contributing factor.  And chemo effects are cumulative.  But lets just say chemo yuckiness combined with constipation crankiness make for some pretty miserable days.

Today is day 9 and I am feeling much much better.  I still feel tired but I do have sparks of feeling normal again.  I have some lovely little white bumps on my face - which after the first round I thought was from the cipro, but now I think are from the steroids.  I am eating like there is no tomorrow - I cannot eat huge portions so I am eating more frequently but yesterday I was starving all day long.  I think it is a good sign as my body needs fuel to repair itself, but it is hard because my eating is not "normal".  I am avoiding a lot of acidic foods (including tomato sauce), the docs said not to eat raw fruits/veggies unless they are peeled, and spicy or strong smelling/tasting foods are also out.  I feel like I am eating like the pickiest kid in the world.  Oh yeah, I cut the crust off my sandwiches too.

I am also on a mission to prevent mouth sores.  I had a couple last round and they were horrible.  They happen on the lowest immunity days which for this kind of chemo is on days 14-16.   The sores look like little red dots on my tongue.  They are fine if I am just sitting here, but if I go to eat and some food touches it they become extremely painful.  Like someone hit your tongue with a nail/hammer.  I have been rinsing my mouth several times a day with a rinse of salt and baking soda.  I hope it helps, but I have forgot to do it a few times . . . but I wont know if it worked until next week.

Wow, I wrote a book.  I should probably write more often but for some reason I have had writers block and not had the motivation to work on posting.  I am still working on the post about hair loss . . .