Sense of Taste during Chemo Treatment

My sense of taste is all messed up.  Seriously, you have no idea how funky it is.  One of my favorite treats is some Mexican Bread - the empenada with custard is my favorite and my hubby went and got some the other day.  I tried it yesterday and it tasted bitter.  Yes, bitter, yucky.   If you don't know what this is, just think of a custard turnover, creamy sugary yumminess, well at least that is how it used to taste.

In general I think my salty taste receptors are functioning OK, it is just sweet stuff that sometimes tastes weird.   And I have not figured out how to know what food will taste good or not.

• custard empenadas - NO
• nectarines - no
• bananas - yes - I have been averaging 1-2 a day
• yogurt - so/so, but I have been forcing myself to eat it  (greek chobani with 14g of protein)
• cheese - YES, yes and yes!!!  put cheese on it and I will eat it right now
• avocados - YES - I think avocados are probably the worlds best food.  Period.
• pasta with a simple/plain sauce - yes
• apples/applesauce - yes
• papaya - yes (I was surprised)
• milk - yes

This is one of the reasons I am struggling with eating.   I went to the store yesterday and bought anything that sounded good.   I have been eating a lot of turkey cheese sandwiches, yogurt, milk, string cheese, rice, pasta.   I feel like I am eating like a kid - small frequent meals of very blandish food.  

On Tuesday they weighed me at my appointment and I think I have lost about 3 lbs in almost a week. :-( Let me go eat something and hope it tastes decent.

Lymph Node Pathology Report

Direct quote from an email from the surgeon . . . "I am pleased to inform you that the pathology on the three sentinel lymph nodes that I removed was NEGATIVE for cancer. In other words the cancer has not spread to the lymph nodes under your arm. This is good news!"


Hmm, my hubby told me they told him after the surgery that they removed 2 nodes, hmmm, but whatever, they are clear :-)  This is particularly important because the tumor growth rate is the most aggressive, which also means the most likely to spread.

Cipro Allergy?

I developed some little tiny pimples on my face yesterday.  I also had a follow up appointment to my ER visit.  I told the doctor and she said that it was probably best to stop taking the Cipro - yippee!!  I had already started to experience some gastrointestinal issues from the antibiotics(or that it what I blamed anyway).  Now my face is red, itchy and I have weird pimples.

ER Visit

I ended up in the ER - I certainly hope it was my last time there as I did not like it at all.

So on Sunday I woke up and the back of my throat was dry - I hoped it was just the way I had been sleeping, but drinking water seemed to help a little.  I was still very tired, but had a small appetite, which I have learned is a good thing.  I didnt do much the whole day (story of my life lately) and it was pretty warm and stuffy in our apartment.  My throat also started to feel more scratchy and I had to clear it before I could talk.  The docs all say to do some exercise (walking) everyday and I hadnt really been feeling like it.  But I was determined to go for a walk.  My hubby doesnt like going out when there is too much sun, so waiting until the end of the day meant he would join me.  So we waited and finally went out, just in time to catch the eclipse.  The walk really cant be called exercise as it was a short stroll around our complex.  The eclipse was a nice distraction as my hubby stopped to take pics with his phone(and I enjoyed the breaks).  When we made it back I did feel a little more energized, but still tired.  And there was a slow cough starting to develop.

The TV watching then commenced - but I was not talking to my hubby because my throat hurt each time I talked.  I even had a few coughs.  They felt like I was getting sick. :-(  So I lay on the couch and watched TV for a few hours contemplating calling the numbers they gave me to call.  I re-read the instructions several times. Call immediately if you have any of the following symptoms:

• Fever over 100.4F
• chills, sore throat, "cold" or "flu" symptoms
• New cough, or change in cough; coughing up yellowish or green sputum
• and more unrealated ones.

I was contemplating what they "really" meant - I felt warm, but didnt think my temp was over 100.4F, no chills, I did have a sore throat that with each passing minute seemed to get worse, and I was seeming to develop a cough - but I wasnt coughing up anything at all.  I was trying to avoid it because it was late on Sunday but I did feel tired.  I finally took my temperature 99.9F  ok, I knew it wasnt that bad (but I also procrastinated doing it).  OK, let me call the number they gave me and since my temp is lower than the amount they will tell me to just keep an eye on it, right, RIGHT.

I called and was asked the same questions over and over by different people - no, I am not having difficulty breathing, no I dont feel dizzy, no I am not having difficulty walking.  And I did answer some related questions . . . and her final answer was that they do recommend I be seen by a doc.  Really?  my temp isnt that high, but better safe than sorry, right.  So due to the time my only option was the ER.  Hubby took me and thankfully there was no one in the waiting room.  I was taken back, blood pressure, heart rate and temperature taken.  Then they set up an IV and took blood . . . ha ha, I look like a druggie.  Plus, now that I have had lymph nodes taken from my right side they cannot use that side to take blood, blood pressure etc.    So since I had a surgery on Monday I still had the remnants of the IV on my wrist.  I had blood taken on Tuesday (pre-chemo labs) and had that on my elbowpit, and I had the chemo infusion on the back of my hand (with a giant bruise too).  The nurse finally set up the IV on my wrist about a half inch from the one from my surgery.  Then they took me back to a room and we waited for the doc.    The whole time I am scared - I had never been to an ER . . . well, that I remember (concussion when I was in my early 20's - they tell me we went to the ER, but I have no memory of that entire day :-( but that is an aside).  So to recap, I was scared, tired and not feeling well.  Fun times.  At least we didnt have to wait too long, And the doc took a throat swab . . . yeah, the one where they stick a swab in the back of your throat until you gag.  And when you have a sore throat already that spot feels extra dry for a long time after.

Then the nurse came in to take my blood.  I did not like him at all.  He is like a bull in a China closet that clearly wished to be a doctor and was too cool for us.  The first thing I didnt like was that he came in kindof disorganized, talked to me like I knew what was going on, he dropped things and seemed like he was taking shortcuts.  So even though they just set up an IV the doc said they couldnt use that for the blood - wth? then why did you put it in???  The nurse confirmed the same thing.  As I have said before, I cannot watch them stick me so I had my eyes closed.  But by the setup tray there were several culture bottles and I think I saw several tubes.  The nurse said he could get a couple from the IV - ok, I'll take that I just hope it is correct.  He pulled a sample then started to do the prep for it at the foot of the bed.  I thought it was safe to open my eyes then . .. but then Mr Graceful pulls out a huge needle directly in my line of site and just hoovers it around . . . my eyes were big!!  He then injected it into two culture tubes and snapped the needle guard back making a loud noise (at least to me in my hyper sensitive mood).  WTH - dude, I know you do this all day but dont be swinging that needle around infront of me like that - not cool, not cool at all.

Then he tried to stick me in the elbowpit (not sure what it is called, where they normally take blood) to get the sample that couldnt be from the IV.  This was a disaster.  Again, I was not looking but I know he stuck me . . .and it hurt, more than normal.  But he was baffled by why no blood was coming out - so he stuck the needle in further - ouch!  He also at this time had put some supplies on the side of the bed next to me . . . I heard something drop to the floor and some other weird noises.  Not good.  He finally decided that since it had been 15 minutes that he could take it from the IV.  So he proceeded to do that with the same clumsiness that was making me nervous.  He finally finished and said I also needed a urine sample.  He seemed irritated and looked at me like - well go give it - um, dont you have to give me a cup and tell me where the bathroom is first??  I did go give the sample, then came back into the room and put the sample on the table (I had to ask what to do with the sample).  A minute later I saw him walking right towards my room (glass doors) and he went the other way.  About 5 minutes later, when my hubby got up and walked near the door he asked my hubby if I was back yet . . . grrr, dude how did you miss me??  He then clumsily puts the bag over the cup and flips it over . . . oh, I sure hope I closed it tightly enough.

Oh, and during the process he also took my temperature - 100.6F . . . over the "threshold" for me . . . he then says that the glass doors to my room have to be kept closed and proceeds to close them 4 inches more (but still like half open).  He leaves and comes back without closing the door.  He did come in with some tylenol and water. I took the tylenol then reached for the water, which was in a paper cup from his hand, but the only place I could grab it was on the top - and then said Whoaa it is a paper cup as I almost spill it.  Um, do you see the metal trays  if you put the cup on there then I can grab it wherever I want to . . . grrrh.

So after about an hour of waiting, the doc comes in and says that my first labs are OK, that he will give me an antibiotic and send me home.  Yippee.  My wbc's were like 12 and the other results will not be back for a couple of days and I needed to make an appointment for Tuesday.  Then he leaves.  OK, um, someone please remove the IV.  I hadnt seen my "favorite" nurse for a little while.  A few minutes later Patty comes in to take out my IV . . . yeah for Patty who was covering for Mr. Bedside Manner.  She removed it gently - she even took care to remove the tape carefully.  Then I was  allowed to get dressed, check out, pay for my visit and went to the pharmacy to pick up my prescription for Ciproflaxin which we got in short order (glad it was slow).

Then we went home . . .  and probably because Mr. Clumsy got me all nervous, I was hungry.  Yeah, it was 2am, but I was hungry.  So I ate some yogurt and was about to take the Cipro until I read that you are not to take it with yogurt or milk products.  Um, ok - I'm going to bed and I'll deal with this tomorrow.  I went to bed, but couldnt get comfortable.  I am a side sleeper and my left side hurt from the needle pricks and my right side I couldnt get in a position where the lump didnt get in my way.  I did finally fall asleep after awhile and was happy to sleep in.  I did wake when my hubby was going to work but I fell right back asleep.

So overall I am glad that it turned out to be just "I am getting sick" but just wish it wasnt such a hassle to get that info.   I slept most of Monday which is just what I needed.  In some ways I wish I wouldnt have went to the ER, but in other ways it was good to have that peace of mind, especially since a simple cold can be dangerous while undergoing chemo.

Every Day is Different

Thursday was an OK day, except I wasnt hungry for much of anything due to a yucky taste in my mouth.  I did force myself to eat some things, but not enough.

Friday was a horrible day.  I woke up early in the morning (thursday evening) and felt a little nausea.  I drank some water and it felt better (it was like stomach acid was coming up from my stomach to my mouth) and I went back to bed.  But then when I woke up again it was worse.  I took my regular anti-nausea meds(last day) and tried to eat something.  It wasnt working.  I was tired, nauseous, and hungry but couldnt eat more than 1 bite without feeling full or wanting to spit it out.  I tried eating several things, but nothing worked.  I finally broke down and took my backup antinausea medicine (yeah, I have a backup and a backup of the backup).  I felt better nausea wise, but it made me want to sleep.  And of course all day long people were calling or texting me, sigh - I didnt even have the energy to answer those.  After I slept off the anti-nausea medicine and my hubby came home for lunch and I was trying to eat again - and did eat some pork he was eating which didnt sound good, but once I ate it went down really easily (and I had more) did I start to feel better.  Well all of that eating required a nap too.  By far that was the worst day so far!  I am not sure what I am going to do differently next time to make sure I dont have a day like that again - maybe try and eat something else.  My hubby did go get some more groceries on friday after work, so having more choices of bland food is important.

Saturday I was recovering from friday, but I was starving all day - and ate a ton, yippee - the last thing I want to do right now is lose weight.

I still have the yucky taste in my mouth, am tired a lot, and only want to eat really bland boring food, and my skin smells really horrible, but I'm hanging in there.  This is going to be the longest 6 months of my life . . .

AC Chemo

To say I was scared is an understatement.  But what else would you expect.  The morning seemed like a dream in some ways, in part because it was so "normal" but also because I never thought I would be doing chemo, at least not at this point in my life.

Of course because we were running late, there was a line to check in.  And coughing people in line in front of me.  One of the things I have to be very careful of is the risk of infection - so I am paying attention to who is around me and who is coughing, sneezing, etc.  Then we went to the 4th floor and waited.  Then my nurse Joy called my name and we walked into the infusion center.  She said we have room/booth 7 available - I hope that is a good sign :-)  As I walked by I could see other people - including a kid of about 15 or so that was getting his chemo . . . there were a lot of people getting chemo :-(

We sat down, Joy went over some information including that she would give me some anti-nausea pills as well as in IV form.  She also explained that I would loose my hair - it would start in a week or two and by the time I was back for my next treatment it would all be gone :-(

The IV antinausea medicine is called Emend and some people have nicknamed it "Amen"  ha ha.  When she hooked it up I felt a cold sensation in the veins of my forearm - weird.  Then we start the Adriamycin chemo . . . this one comes in 2 giant syringes and it looks like cranberry juice.  She also explained that she would inject some of it, then pull back and draw up some blood then flush it with the saline.  Wow, no wonder they call this chemo the "Red Devil".  She was also timing everything so that the right dose was delivered.  I couldn't watch - I did feel a warming effect on the same vein that was just cold from the Emend.

Then she flushed some more saline and set up the Cytoaxan.   This was just a simple IV drip setup and would take about 30 minutes.  A few minutes into it I felt like I had to sneeze, but the sneeze like it wont come out, just a tingling under my nose.  Then I had some sinus pressure, and I eventually sneezed. I guess this is a common reaction to the Cytoaxan.  It went away after an hour or so.

I happened to be located right outside of the restrooms - so I was able to see everyone come in and out of the bathroom - most of them wheeled their drugs with them on the cart thingie.  I did feel like I had to go, but decided I could wait until I was no longer tethered.  One girl who looked like she was also in her 30s and was wearing a beanie happened to walk by as I was explaining that I couldn't look at the nurse pulling up the blood . . . she kindof looked back at me and smiled . . . I wonder if she had this treatment too.

Afterwards I felt OK - kindof a little tingling sensation on my legs and arms, but for the most part I was OK.    We decided to go and look at some wigs and went to a place where Joy recommended in Orange.  This is the 3rd wig shop I have been to and the owner Jenny was really nice - she had breast cancer too.  I tried on several wigs, but it was hard because she didn't have a color similar to mine - and had only a few long wigs.  I want something similar to my hair, but it can have some built in style and the ones that she had weren't exactly what I wanted.  I feel bad because I have been to two small shops with great customer service, but the wig I liked the best was from the store full of kids that weren't helpful at all.  I wish I had the model number of the one from the first store so I could order online.  Online is cheaper, but I really want to see it  . .. decisions decisions.

It was hot in the wig store and I was sweating like a pig . . . we went home to go eat something.  My lovely hubby was making food, but I started to feel groggy and out of it.  I did end up eating some of what he made, but not as much as I wanted to eat and not what I thought - he was making some rice with garlic and onion and I tried one bite and that was it.  I also had some chilie flavored popcorn - probably not the best decision.  My hubby also said that he could see I was swollen.  I agreed.  We watched a movie, but I couldn't get comfortable and just overall felt weird.  I did manage to sleep a little which is good.  I have been drinking water like it is going out of style - but that is good.  So I was up every couple of hours at night and each time I woke I felt more swollen and noticed I was moving very slowly and had a headache.  About 7:30 or so I woke up and was feeling better - less headache and feeling less swollen (I am still swollen, just not as much).  I have been able to eat a little something, but my taste is way off, but I'm eating whatever I can manage and trying to eat several small meals, but still feel like I need to eat more.

If you saw me you probably wouldnt know what is going on other than I look tired and swollen, but I noticed that my skin is starting to have a weird smell . . .

I am not sure if any of this makes sense - I feel like I jumped around a lot and am not as focused as I have been in the past.


Update 10/5/12 - Here is a picture of the Adriamycin (AKA Red Devil Chemo) going in - it was taken from a movie of my first chemo.  I couldnt watch when it was going in, and when they had to make sure they had blood return and I told myself I would not watch the movie until I was done with Adriamycin.  I will upload the video later, but for now, here is a picture.

About to get started

Insurance does NOT Cover a Wig

I was super surprised to find out that my insurance does not cover a wig . . .ahem I mean cranial prosthesis.  I called several numbers and finally got to talk to someone in member services and they even checked with their manager and it is not covered!!!  Now I am not normally a complainer, but I think that this is just wrong.  Imagine loosing your hair in a matter of weeks!!!  Head fully exposed, no protection from the sun, no warmth, a distorted body image . . . really REALLY think about it.  I think for me second to knowingly injecting myself with poison loosing my hair is a concern.  A big concern.  Today I walk out in public and no one knows I am sick, heck I even forget it myself, but you go out in public without hair you look sick, or at least have people look at you differently, especially as a woman.  I still cannot believe it that they do not pay anything . . . and it is not offered on any plans that they have in case you were wondering if I just got a lousy plan - even their best plan does not offer anything.  Wow . . . pick my jaw up off the floor.  Thank goodness there is a law that all insurances have to offer breast reconstruction.

I filed a formal complaint.  This is just wrong.  Insurance covers Viagra but does not cover a wig for a cancer patient or alopecia patient (their hair NEVER grows back), what kind of world do we live in???

There are some places that offer free medical wigs, but a lot of them say for people in need . . . while cancer has cost me a ton of money, I should be able to still pay all of my bills, even while off of work I should get close to my regular amount.

But seriously - they don't pay for anything for a wig!  My jaw is still on the floor.

Oncology Appointment

I had an appointment today with my oncologist to answer a bunch of questions before chemo starts tomorrow. I also figured that she would have the results of the MUGA, bone and CT scans I did last week.  I hoped she would have the results of the sentinel node biopsy, but know that was very optimistic.

Bone scan and CT scan show that it has not spread to distant locations!!  yippee, that is good news.  The results of the sentinel node biopsy will tell if it has spread to the lymph nodes(considered regional).  The doctor didn't mention the stage, but my discussions, or rather research with Dr. Google have told me that I am probably stage II . . . if it is in the nodes it is IIb, if not it is IIa.  Please don't let it be in the nodes - they are kindof the gateway that leads to the rest of the body.

The surgeon said that if it is not in the nodes that the oncologist will only do 2 rounds of each chemo, well the oncologist said that wasn't exactly right.  What she was thinking is that if it is not in the nodes that she will do the 4 rounds of AC chemo then breast surgery (lumpectomy) then continue with the taxol.  I'm still a little unsure of why this is better other than I get a rest from the chemo.

We also discussed fertility in detail.  She is understanding, as a woman, and as someone who had to have help to have children too.  She said that she would prefer for me to start treatment than to try and freeze eggs because of the time delay as well as I would have to take hormones to stimulate the production of the eggs.  She has had several patients who have done chemo and then had their periods returned.  But so far none of her patients have had children after treatment.  We also briefly discussed Zoladex and she is concerned that it will reduce the effectiveness of the chemo, which isn't what I want either (with grade3 and close to triple negative).  She promised she would look into if there are any other studies on chemo and fertility and if there was anything I could do.

She also gave me a prescription for a wig . . .

I then scheduled some other appointments and did my pre-chemo labs.  After returning home I got a call from the pharmacist - they didn't give me a HCG test and it was needed.  I called to explain that I just had one yesterday before surgery, can they use that one.  Then later I had 2 messages - one was that I still needed to do the HCG so that there was the proper documentation, then the next one was that I did NOT need to do it because they were able to use some of my leftover blood for the hcg.  Whew, but it is kindof insult to injury that I have to take a HCG test every 3 weeks and have been tested twice in the last week . . . ahem, I know I haven't ovulated yet so there is no way I could be pregnant.  But the docs don't know that.  So I think the final answer is that I do not need a HCG sample . . . which I guess is good because my urine is still a little bluish.

So my two new nicknames are Radioactive Girl and Smurfette (due to my blue urine), hee hee . . . have to find humor in this somehow.

Sentinel Lymph Node Biopsy

A Sentinel Lymph Node Biopsy tells you if the cancer has spread to the lymph nodes.  My lymph nodes were not enlarged during the ultrasound, which was good news, but the biopsy is looking for microscopic cancer that is not visible in the ultrasound or large enough to cause swelling.

I was told to be at the hospital by 7am, appointment with nuclear medicine at 8:30am and the surgery was scheduled for 10:30am.

We arrived at about 7:10am, checked in, got my wristband and waited.  There were several people already in the waiting room, including a couple we saw during the marathon visit with the 4 docs at once.  She was scheduled to go before me.  We waited and waited - it was a good people watching experience and my hubby was nice and was talking to me and trying to make me laugh.  One guy was pushed up in a wheelchair with his leg in an ace bandage.  He was put near us so we could see his foot clearly and how disgusting his toenail was (yuck).  Another came in on crutches and said they broke their Achilles tendon (ouch).  Another lady was waiting and when they called someone else she asked if they called her cause she left, but her voice and body language was very aggressive and you could see that the nurse was trying to remain cool.

A volunteer old guy came by and introduced himself and said that he was there to answer any questions and that there would be free coffee ready in a few minutes.  Great - no food or drink for me since midnight and I could start to smell the coffee.  Please call my name.  They did within a few minutes - and the coffee started to smell like it was cheap or not good, whew, being a coffee snob worked out for me at that moment.

I was called back and asked to provide a urine sample.  Since I am still in my childbearing years I have to have a pregnancy test before almost everything I do.  It is part of my chemo labwork too.  Insult to injury, but what am I going to do?

Then I was given bay 2 (am I a car now?) and told to undress and put on a lovely purple plastic and paper gown and socks with the pads on them.  I barely got situated and a guy came by with a wheelchair to whisk me away to my appointment with nuclear medicine (read - radioactive shot).  As he was wheeling me over he said his job was to take me over, assist the doc and to hold my hand.  I was like, I'm tough, I don't need anyone to hold my hand.  Then I learned the shot was going to be in the areola.  Um OK, my boobies have had more done to them in the last few weeks than the whole rest of my life, but never injected, yikes.  Then they had me lay down on a bed and he went to go get the doc.  The doc explained where the shot was going to be and that the initial needle prick shouldn't hurt so much, but when he pushes the stuff in it will hurt.  No matter the location I cannot watch them stick a needle in me - psychologically it hurts way more if I watch, so I am in the habit of looking away, so I just closed my eyes, the doc prepped the area and then the nurse held my hand.  The doc was right, the initial needle stick didn't hurt, but then as he pushed (he warned me as he did it) it hurt - it felt like he was sticking a needle all the way up my breast.  The nurse grabbed my left hand and I did squeeze.  And he was right, I needed him to hold my hand.  They let me lay there for a minute or two, then I hopped back on the wheelchair and went back to bay 2.  The nurse set up an iv, took my blood pressure, talked with an anesthesiologist (first one), and told my medical history to the nurse and anesthesiologist.  Since I do have a mitral valve prolapse(heart murmur) the anesthesiologist ordered an EKG.

They then called my hubby, who was in the waiting room this whole time, and allowed him to come back in the room with me.  And we waited some more.  Then the EKG tech came and my hubby had to get out of the way, even move the chairs to get his machine in there, put a ton of stickers everywhere and the actual ekg took about 2 minutes.  Everything looks good.  I figured as much - I know I have a heart murmur, but it doesn't impact my daily life in any way.

Then we waited, and waited and waited.  From my bay I had a clear view of the board.  My surgeon had another surgery before mine - I figured it was the couple we saw in the waiting room.  She was in bay 16.  The doc finally came to see me - asked questions, explained the procedure.  The best thing she said was that if my nodes are clear that I will only need 4 chemo treatments, vs the 8 I am scheduled for right now.  If any of you want to send good thoughts or prayers my way, that is all I ask for - that it has not spread.  She then gave me an exam, and agreed that the tumor felt smaller than the other day.  She also explained that sometimes the tumor can get in the way of the nuclear medicine making its way to the nodes.  They did tell me to massage the area as much as possible after the shot.  And if that didn't work that they can use some blue dye.  So I may wake up with some blue dye on me and that would cause my urine to be blue for a couple of days.  Heck the chemo will make my urine red, so lets see if I can pee a rainbow within a week, ha ha.  She then said I had the other surgery before me and that it would be an hour or two before it is my turn.  I think she was late, and she even took a phonecall during my exam in which I heard her talking about her nanny.  Sigh.  I know they are people too, but the waiting is the worst - just get on with it, not to mention my stomach was growling.

Then I waited and waited and waited.  I was hungry and I had to pee.  But I was hooked up to an IV, sigh.  We called the nurse and she took my bag and walked with me to the bathroom.  She hooked the bag on the hook on the back of the door and the tubing was long enough for me to reach the toilet.  Meanwhile I was focused on keeping my backside covered while walking to the restroom in the paper/plastic gown that was open in the back.  I used the bathroom and noticed there was some backflow of blood into the iv(it was on my wrist) so I rushed to finish and get back to her, but it was good to go, cause i was holding it for as long as I could to make sure I didn't have to go again before the surgery.  I saw her in bay 1 with someone else and asked her if it was normal, she said yes and asked another nurse to help me.  whew.

Then I waited some more (do you sense a theme here) and an anesthesiologist (#2) came by and talked to me, looked at my chart, etc.  She then left and I waited some more.  Then another anesthesiologist came in (#3) and said he would be my anesthesiologist.  I was like what, there was just another one that said she would do it.  He said she was relieving him for his lunch break (but I guess he was back now).  Oh yeah, it was a few minutes before noon (surgery was initially scheduled for 10:30 but the board said 12).  He then explained he would give me some stuff and I probably wouldn't even remember being wheeled into the operating room.  Then a couple minutes later they came to get me, I kissed my hubby goodbye as the doc reached over to my IV and said here is the "happy juice"  yeah he actually said that.  I do remember being wheeled into the first operating room, having about 3 other people being in there and I think someone added something else to my IV as everyone was staring at me, just waiting for me to go out.

Then I woke up in recovery.  I opened my eyes and the way I was laying I was staring at the clock.  1:05pm.  I tried to keep my eyes open but couldn't.  Then I opened them at 1:10pm.  I wanted to try and wake myself up as much as possible so I could go home and eat.  Yeah, I was still starving.  My mouth was numb too - they did tell me I would have a mouth tube.  It was hard to talk and my throat was dry (it was dry all morning).  The nurse was right there with me the whole time.  I looked at my chi chi and it was blue - darnit, did I just have a shot of radioactive material in the nipple for nothing?   The nurse asked me some questions including if I was in pain.  I said on a scale of 1-10 it was about a 3.  She asked if I wanted some meds, but I said I was OK.  I hate taking drugs unless I really need them.

The nurse called the hubby to get my pain meds from the pharmacy and pull the truck up to the waiting area.  Meanwhile I was given some apple juice with ice and allowed to get dressed (not a minute too soon).  There was some confusion but eventually the hubby picked me up, I was wheeled down to the truck and we were on our way home.  I wasn't really in any pain.  The hubby said that the surgeon came and talked to him and that she took 2 nodes out and that I was OK to do almost anything and I could take a shower tonight (the nurse said to wait 24 hours).

I went home and ate something - I was starving.  The nurse said to start with something light like soup or salad . . . I had some fruit but then went on to more.  I was still OK with the pain but decided to take one just in case.  I did get sleepy after that and went to watch a movie in the bedroom.  I was still OK several hours later and didn't take another pill until bedtime - more to make sure I got some good sleep than for the pain.  I did sleep pretty well - heck I slept until 8:30!  but felt good in the morning.  I even think I figured out my mystery pain on my left ribcage .  . . I am normally a right side sleeper, but have been sleeping on the left side lately - and this morning I woke up to my ribcage hurting as it was pressed against the bed.  Hopefully that is what is causing it.

Recovering

I'm recovering from my Sentinel Lymph Node Biopsy and doing well. I'll post details later, but here is a preview - areola injected with radioactive material, long wait, had my tata signed, and my urine is blue.

Happy Mother's Day

Happy Mother's Day to all of you lucky enough to be a Mom.

The last 5 years have been hard on Mother's Day.  My Mom passed away a little over 5 years ago and since I am not Mother, the day became just another day for me.  I have been trying to be a Mom for the past 3 or 4 mother's days too, so that made it hard.  Now this Mother's Day I am facing treatment that will likely solidify that I will never be a Mom.  That is hard medicine to take.

Those of you lucky enough to be a Mom, please cherish the moment, even if you are not getting sleep, covered in vomit, or facing any other host of parenting challenges.

Pre-Op Surgery Instructions

Sentinel Lymph Node Biopsy is scheduled for tomorrow at 10:30.  I thought that since my lymph nodes were not swollen that I was good, but I guess not.  The oncologist wants to do a Sentinel Lymph Node Biopsy to make sure? or get more info?  about my nodes.  The sentinel nodes are the first nodes that it would travel to if it were to spread, so by looking at those the docs have a better idea if it has spread.  If I were to have the lumpectomy/mastectomy before chemo then the nodes would be removed then so I was going to have this done anyway, just now it is a little sooner.  It kindof worries me that she wants it done even though my nodes were not swollen, but better safe than sorry.  The surgeon is the one who called me and told me about this, but she also said if my nodes are clear that I will only have 2 rounds of each chemo(instead of 4 each like I am scheduled for) so that makes me feel a little better about this.

Instructions:

• No food or drink after midnight on Sunday
• arrive at the hospital at 7am
• go straight to the second floor
• I have an appointment at 8:30 with nuclear medicine (which means I get to be radioactive girl again)
• Surgery at 10:30
• Surgery lasts about 1.5hours and I'll be in recovery for about 1 hour
• Make sure and bring copay (whaa?? I didn't think about that)

So I called Member Services on Friday to find out what the copay is . . . $150 and it is payable right now.  Whaaa???  you wouldn't even have contacted me if I hadn't called!!  She got snippy and was like I called you and left a message and you didn't call back.  Those of you that know I can be calm even though I should explode, know that I calmly said "you did?"  she then looked and said oh, i guess not - you weren't on my list(because it was just scheduled on Thursday).  In my head I thought "Yeah, I know you didn't call so don't pop attitude with me" she then said I can pay on Monday, but really, could you be a little nicer - whomever is having surgery is likely not in the best mood this isn't elective surgery.

Not looking forward to the surgery, but hoping that my nodes come back squeaky clean.

Chemo Orientation

Orientation is often for something fun - like college orientation or new job orientation.  Chemo orientation is not fun.  Well, let me clarify - it was useful, but I would prefer not needing to have chemo orientation.  But such is life.

My hubby picked me up and we went to the appointment.  It was understandably pretty quiet on the ride over there :-(  I checked in and they gave me a wristband.  Wristbands are also something usually associated with fun - you get one at the skating rink, at concerts, bars, and even WowZville.  This is not a fun wristband :-(  We were instructed to go to the 4th floor.  As we were walking to the elevators there was someone in a wheelchair that was coughing up a storm.  Since I had to go to the bathroom anyway I chose to do it then so we didnt have to be in the same elevator, whew.  The elevator opens on the 4th floor and I see signs for Chemotherapy and a small waiting room.  Sigh, it kindof hits home.  It was a little confusing as there was a waiting area, but then there was an arrow that showed Chemotherapy was down the hall with some chairs there.  I walked as far as I thought I could without being in the wrong place then decided to sit on the chairs in the hallway.  As we were waiting I saw someone walking out with a headscarf.  Sigh.  Then she called my name, introduced herself and we walked in.  We walked past several empty stations(booths?) into a conference room.  She then set up a dvd with information on chemo.  It went over everything very slowly and listed all of the potential side effects.  I could see my hubby had his head in his hand for awhile.  I have done a lot of online research in addition to both of my parents had chemo, so I was a little more informed.  Still scary though, I just think I was better prepared.
Then she came back in and went over the 3 drugs I will get.  She had printouts from a website I had already been to - chemocare.com  a website that Scott Hamilton is associated with.  Some of you may not know, but Ice Skating is my favorite sport.  I did not get into it until I was an adult - but I did take lessons off and on for about 10 years.  I still go occasionally.  But I digress (it is so easy to start thinking about something else since almost everything is more fun than this).  I did think it was a good sign that out of all the websites out there she chose to print the information from the website he is associated with.

I will be getting a total of 3 drugs.  All chemo is scheduled for 3 weeks apart.  The first 4 sessions will be with Adriamycin and Cyclophosamide.  The second 4 sessions will be with Taxotere.  This is commonly refereed to as ACT Chemotherapy and is common for Breast Cancer (I asked the nurse how long she has seen this kind of chemo and she said they have been using it for the 7 years she has worked there)

She also went over the side effects and some info about how each is administered.

In general, I get labs done the day before, then start with a review of my labs.  Then I get situated and get the IV set up.  I do not need a port-a-cath (yippee!!!) but I asked about the specific location of the vein and she said wherever it is good, but made some reference to the back of my hand or my forearm.  As an aside - when I had surgery to remove a cyst from my wrist I had an IV on the back of my hand and I think in some ways that hurt more than the surgery site.  So I really hope for another location, but I can tell you that my left side inside my elbow (the "normal" place they take blood) is bruised already from the injections for the MUGA scan and Bone Scan.  Plus I'm sure I will have one more for the sentinel lymph node biopsy on Monday.  So basically what I am saying is I look like a druggie right now, sigh.  OK, back on track - there will be saline flushes in between (or before/after) not sure - I just know there will be saline flushes.  She said overall it will take about 3-4 hours.  I come in, they review my labs and if they are good they start mixing the drugs.  They don't start mixing until I am there, labs reviewed and am ready to go.

Adriamycin - it is in 2 syringes and is red . . . yes red.  I soooo want to google why it is red, but my "ignorance is bliss" self defense mechanism is in place right now regarding this.  I will google it later to find out after I am done though.  She said that one will be first and only takes about 15 minutes to receive.    Side effects include urine that is reddish or pink for a day or two after injection (can you say fun??) and Hair Loss.  I saw online someone refer to Adriamycin as the Red Devil . . . sounds like fun, huh??

Cyclophosamide - is given after the Adriamycin and takes about 30 minutes to infuse and comes in a bag (I think).  Side effects include Hair Loss and Loss of Fertility.  The latter is one I am still struggling with how to deal with.  Well, I am struggling with Hair Loss too, but it will come back, fertility on the other hand may never come back.  I asked the oncologist about things to help lessen the effect.  She didnt know about those, but I have an appointment on Tuesday and will ask her again about some things that Dr. Google told me about.

Taxotere - the nurse said this one is a lot easier for patients after they have done the first two.  This is given intravenously but you take steroids for 3 days before and 3 days after.  I forgot if she said why, but chemocare.com says it is given to reduce the severity of fluid retention and allergic reactions.  I believe the nurse also said it helps to increase your appetite.

We also talked about nausea and she said that they give me an anti nausea medicine to take 3x a day for the first 3 days, then give me a prescription for a backup in case that doesn't work.  And she said if those didn't work then they have other ones.  She flat out said that if I have nausea or vomiting then something is wrong because they can control that.

She also told me that I have to call or go to urgent care/emergency room if my temperature is over 100.4F, have a cold or flu symptoms, vomit that looks like coffee grounds (cause it means there is blood in there) or a host of other things.  The temperature thing worries me a little since for me a "normal" temperature is often in the 99's and on the day of my appointment with the surgeon, oncologist, etc my temperature was 100.1F and as some of you know your temperature rises in the second half of your cycle . . . but loss of a period is also a common symptom so I'll just have to wait and see . . . I don't want to go to the emergency room/urgent care.

She also said that all of the chemo drugs will affect my white and red cell counts as well as platelets.  There will be a lot of tests and maybe even some injections to help.  The low point, or nadir of my counts will be dependent on the drugs, but for Adriamycin and Cyclophosphamide it is 10-14 days after infusion.  What I read is that for the first week after you feel bad, the second week you are really immunosupressed and should stay away from likely germ sources and the third week you start to feel good again (only to start the next treatment).

Then she gave us a tour of the place so I could get an idea of what is going on.  And then she also gave me a blanket that was donated from joyfulfoundation.org which was a nice gesture.  The nurse seemed really nice, but nervous.  It was late in the day on Friday so I'm sure she wanted to go home, but she was patient and answered all of my questions.

Still scared . . . but more educated now.

Oh, and the whole time my stomach was going crazy - I think the mystery drink I was given for the CT scan did not agree with me.

CT Scan

I just got back from my CT scan.  I had to check in 2 hours before and they gave me a cold beverage.  Now we're talking.  If only it were a soda or wine or Mai Tai I would be happy.  It was oral CT contrast in a soda cup.

The cup says Compliments of the Orange County Radiology Department.

They didn't tell me what was in it, but Dr. Google tells me that it was probably Barium sulfate.  I was expecting it to taste really nasty, but it wasn't that bad.  I dont know how to describe how it tasted, it kindof tasted like water but a little thicker with some mineralish aftertaste.  In reality it wasnt that bad. It was in a 32 ounce drink cup and they told me to drink most of it but leave a little.

So I got to wait in a packed waiting room.  When I walked out I saw several people with the same cups and one guy even said cheers to me, haha.

Then about an hour and a half later, but still before my scheduled appointment time I was called in.  This was another machine with a bed that I was asked to lay on.  He put a gown over me and said to take my pants down to my knees (I was still covered), then the bed thingie moved towards the donut shaped part of the machine and said he would normally start the IV at this time with the contrast material, but the doctor ordered it without contrast because I'm not sure if I am allergic to iodine or not(better safe than sorry).  He then said it would take about 2 minutes and that he would give me breathing instructions.  I closed my eyes and he did come on and said to take a breath and hold my breath.  This was done about 3 or 4 times with each time seeming like I had to hold my breath for longer and longer, but in reality it may have just been after the 3rd time I was not able to hold it as long.  But occasional shortness of breath is probably my only symptom.  Then we were done.  I asked to see the picture, because it is cool and I wanted a preview.  He said I could see it but he wouldn't point out organs.  I didn't really know what I was looking at and he started to point out organs but then stopped.  I did notice that on one side it was much brighter and in part of my intestines it was brighter.  I'm fearing the worst, but it is what it is, right.  I have had a pain under my left rib off and on the last few days - and I have been burping more than normal too.  I'm hoping that the pain is just gas pressure along with me not sitting up straight.  Hoping for the best, as always.  Just had another large burp and do feel a little better, hopefully that is what it is.

Upcoming appointments:

Chemo orientation 3pm today
Sentinel Lymph Node Biopsy Monday - be at the hospital at 7am
Appointment with Oncologist - Tuesday
Chemo appointment - 1:30pm on Wednesday

Two and a half weeks ago my life was "normal" and I thought I had a cyst.  Since then, I have been injected with radioactive stuff twice, drank some unknown beverage, been poked in the breast to put titanium in there, am not sleeping well and had several doctors appointments.  Oh an I feel fine . . .  I don't feel sick except for a little shortness of breath when I go up stairs or walk fast and a little pain on my left side that I am hoping is just gas.  Scary stuff.

Update - been having stomach issues/gas pain all afternoon . . . maybe it is gas pain (fingers crossed)

BRCA Breast Cancer Gene Test

At my first appointment I was given the option of taking the BRCA test, which is a simple blood test. I chose to have the test even though only about 5-10% of people with breast cancer have the gene.

Standard protocol is to get the results during an appointment. With all the appointments I have these days and the doctors busy schedule that is almost impossible. Thankfully the doctor was willing to call me with the results.

Normal results, no BRCA gene. If I has the gene the docs might recommend a prophylactic mastectomy (like Christina Applegate).

Crazy Day Yesterday

So much to do, so little time. That has been the story of my life lately with the business, but now it is trying to coordinate my doctors appointments and wrap up business and work stuff.

The surgeon also called and said the oncologist wants her to do a sentinel lymph node biopsy. Wha? I thought I Was good because my nodes were not swollen, but I guess she wants to make sure because it will affect how many chemo treatments I have. Ok, I get it now, but that is scheduled for Monday, yikes! It requires general anesthesia, but no drains (yippee). I guess this is normal procedure for during the tumor removal surgery but since I am doing that after chemo in the hopes of having a lumpectomy and the oncologist wants the info to make chemo decisions it needs to be done this way. I can't say I am happy about going under general anesthesia twice, but I would prefer a lumpectomy. But if they don't get clear margins I may need a mastectomy (think Giuliana Rancic).

Monday is the only day the surgeon is available to do this so on top of my million appointments I need to squeeze in preop info and reschedule my appointments for Monday. Chemo orientation was scheduled for then, and I hope it will answer a lot of my questions.

On another note I talked with HR and it looks like I will get close to 100% of my income in disability, if I can fill out the paperwork correctly. Work has been really accommodating and flexible which is nice not to have that stressing me out :-)

Bone Scan

I had my bone scan yesterday.  I "got" to go to my favorite anaheim location, but at least this time I knew my way around.  I checked in and sat down in the waiting area.  It smelled like Vegas.  Smell is a funny thing, but I was sitting there and all I could think of was a Vegas, and not the "new" Vegas with the cool nice casinos, but more like one of the older, seedyer places.  My guess is it was the smell of vomit, sweat and carpet, but that is just a hunch when I tried to think of what a hospital and Vegas have in common.

Thankfully they called my name after only a few minutes and told me to go to my "favorite" Radioactive room that I was in on Monday.  Great.  This time it seemed different, there seemed to be more light in the room and the beeping machines didnt bother me as much.  And the same nurse that was there on Monday was there again.  Overall it seemed less scary in there the second time - it seemed like there were more lights, or I just knew what to expect.

The same nurse that saw me on Monday was there and briefly walked me through the process.  Again, this time it seemed less scary.  I don't have a fear of needles, I just cant watch the needle actually go in - something psychological that makes it more painful if I watch - and sometimes I flinch too.  So I generally just turn my head, which I did this time.  When it was over and she asked me to hold the cotton ball on there I saw her put the medicine in a small thick metal box that was like an army green/brown color.  Sometimes ignorance is bliss, but I knew I was going to be injected with more radioactive material and I guess this one was stronger than the other one??

So after my injection I had two hours before I was ready for my scan.  She told me to drink lots of water, so I went to go get some.  As I started walking out of the "radioactive room" as I call it, I started to get this yucky taste in my mouth.  It was definitely coming from the back of my throat and working its way up.  I figured it may be stomach acids combined with stress??  So I went to go get some water.  I got a liter of water as well as a Dr. Pepper to help get the yucky taste out of my mouth that kept getting worse and worse as it was making its way from the back of my throat up to the tip of my tongue.  Yuck.

I found a quiet spot on the campus and sat down to play on my phone.  Sitting outside in the middle of the day kindof reminded me of college for some reason.  I felt I should be studying for a test rather than playing solitaire (and for the record cellphones were just starting to be affordable when I was in college - and you for sure could not play games on them).  It was nice and relaxing as long as I didn't think about the yucky taste in my mouth or why I was here.  I saw several people including someone I thought I saw in there on Monday and an old couple where she was getting a MRI and he was patiently waiting for her - it was cute and made me think of my parents.

For some reason I decided to google "bone scan" to try and learn what I was injected with.  I didnt find this out but did learn that they want you to drink a lot of water to help you get rid of the radioactive material.  Great.  Also it said to make sure and use the bathroom before the scan to prevent radioactive urine from interfering with the scan.  Wha??  Who?? Great.

So I go back in the room and there were different people working.  It was cold too.  I went back to the "closet machine" that seems like it was shoved in a corner that they would much rather be using for storage.  I felt like I was getting on a plane as I was asked to remove the change from my pocket and take my jacket and belt off.  It was cold in there so the technician got me a warm blanket.  If there is one good thing about being in a hospital setting it is warm blankets.  Think of a blanket that just came out of the dryer - aaahhh.  Then he started the scan - first 10 min, then 30 min.  It wasnt as stressful as the other one, but I tried to close my eyes and rest and not think about the yucky taste in my mouth.  Then as it was almost over I noticed some pictures on the wall - these are pictures more like you would see in a hotel room somewhere tropical.  Out of place, but made me think of Hawaii, so that is good.  I think when this is done I will go to Hawaii, or Cancun or somewhere tropical.

I continued to drink lots of water, both to get rid of the radioactive material and to get rid of the yucky taste in my mouth.  More than 24 hours later the yucky taste is still there, but if that is the worst side effect I will get that is OK by me.

Still worried about chemo . . . the doctor called me as I was driving back from my scan.  I called their office and the person I spoke with was very rude.  I know this is routine for them, but for me it is very scary and I need some reassurance/questions answered.  They say the Chemo orientation will answer all of these questions, I sure hope so.

I will have the ACT chemo  . . . Adriamycin, Cyclophosphamide, and Taxotere . . . .scary stuff.


CT Scan on Friday . . .

Lymph Node Scan and Clip Placement

I had my lymph node scan today.  This was ordered because the doctors thought they felt an enlarged node.  But the good news is that there were no enlarged lymph nodes!!!  Which is great news.  I even had the technician double check.  They were going to do a biopsy of one if it was enlarged, but since they weren't they didn't do a biopsy, yippee.  I was very happy about that.

The doctor also put in a clip(?) a titanium post in the middle of the tumor.  Since I will be doing Chemo first which will shrink the tumor, their concern is that they will not be able to locate the tumor when it comes time to have surgery.

Then they did a mammogram to get a picture of the placement of the clip.  I did not know that I was going to have a mammogram and when they told me I got scared because last time I almost cried because it was so painful.  But the technician assured me that it wouldn't hurt as bad.  First,  I was still a little numb from the procedure and secondly she said there wasn't going to be as much compression as a regular mammogram.  She was right - that was the second good news of the day:-)  The technician Karen was very nice and helpful in explaining things to me and also gave me the email address for a place that does free housecleaning for people on chemo and we talked about some other chemo related stuff.  She even walked me over to membership services so I could talk to someone about if a wig is covered through my insurance.

I'll also admit the thought of Chemo really really really scares me.  I keep hearing that a Cancer Care Coordinator (or some other fancy name) will be contacting me, but so far nothing.  Not knowing what to expect is the worst.  And with my chemo date set for next week my apprehension grows as we get closer and closer.  And I want to get the wig situation squared away before I start chemo because I want to donate my hair before I start to loose it.  That just seems like the right thing to do.

Radioactive Girl - MUGA Scan Experience

So I just got back from my MUGA Scan to see if my heart is pumping blood  properly and can handle the chemo.  Since I need it right away - there was a STAT order placed for it - I had to go to the Anaheim location instead of my favorite Irvine one.  So that was the first unknown - I've never been there.  Then after check in and a 30 min or so wait I am told to walk down the hall to a door called Nuclear Medicine.   But this was on the door.  Joy.  

So I go in and there are several machines clicking, the room is dimly lit, and cold.  A Nurse (?) came over and told me to have a seat in a chair like you have your blood taken in.  She asks me if this is my first MUGA Scan and then gives me a surprised look when I tell her yes.  She kindof explained a little of what was going on but I was still confused and scared.  Did I mention I was scared?  I was.  Then she starts an IV and tells me it has to go for 15 minutes.  so I wait, in the meantime they take someone out of one of the machines, and hook up another person (this one was an old guy that was sitting in a wheelchair), think about my situation, think about what is to come, and overall just be scared.  The whole time my fingers on the arm with the IV were getting cold.  It was cold in there and I had to remove my arm from my jacket so she could set up the IV.  

Then she said she was going to inject me with the radioactive material.   She does that, removes the IV and tells me to go to a machine around the corner from where I was sitting, but still in the same smallish room.  I go around the corner and there is this machine shoved in a corner that is also used for storage.  I put my things on a chair, again in another area that is used for storage.  I then lie(lay? sorry grammar police I didn't pay attention in English class) on the bed of the machine, she adds stickers to my chest and tells me to lie still for about 10 minutes.  She and another nurse in there start talking and she adds another sticker to my side.  I think the electrodes(?) weren't working properly, but they eventually got it to work and started the test.  I tried relaxing (yeah right who was I kidding), not thinking about anything.  I could see a screen that was showing up a bunch of dots and tried looking at that for awhile, but it wasn't much fun to look at since I didn't know what I was looking at.  I tried closing my eyes and not thinking, again not working.  All I managed to do was think about how scared and nervous I was.  

Then after what feels like an hour, but I'm sure was only 10 min, they slid back the bed and told me I could remove the stickers, and that I was free to go.  I snapped the photo above as I left in a fog.  I drove home and while I obeyed all traffic rules I was actually driving the speed limit and didn't mind being behind a slowpoke as my mind was still racing and I was still thinking too much.  I am normally in a rush to get where I am going so this was a departure for me, but made me think that the next time I am behind a slowpoke I will be more tolerant.  They may have just came back from their first injection of radioactive material, or chemo, or who knows.  

But in the meantime I decided I will call myself Radioactive Girl . . . and I have a feeling it will not be the last time I am radioactive . . . I guess that is my superpower for the day ;-)

Highs and Lows of Cancer Diagnosis

The worst thing right now for me is that I am sick but sometimes temporarily "forget" that and slip into a moment of "normalcy".  The moment is really great - for a few minutes I forget that my world was turned upside down, that my survival is at stake, that I don't know how horrible Chemo will be, and that this diagnosis prettymuch means I will never have any biological kids - and don't get me wrong, I almost feel "normal" when that happens - a feeling I once took for granted . . . but when reality sinks in I just crash harder.  It is like a sugar high - the candy tastes good and I am happy I had it, until I crash and end up lower than where I was before the momentary high.  Only this wasn't caused by something I intentionally did, but rather something I have no control over.

It is so hard to believe that a week and a half ago I was blissfully ignorant of what was going on inside my body.  That is the scary thing about cancer - you don't "feel" sick.

Manic Friday

So after a long day on Thursday and taking half the day off of work I was greeted with a ton of things to do on Friday.  Which is good in a way, but also creates more stress, that I really don't need.

I have told my boss of my condition and a few coworkers, but for the most part people do not know.  It is hard sometimes because people come to talk to me and are super cheery and it is hard for me to handle that.  So far I have been saying I have a headache, but feel like I am lying.  Then there are other times that I get to talking/working/etc and I temporarily "forget" that I have this huge monkey on my back.

The oncologist called and told me my hormone/HER2 receptor status:
HER2neu - negative  this is good news in some ways because it means no Herceptin chemo and I believe is also thought that positive is more aggressive?
Estrogen Receptors (ER) is weakly positive.  I believe she said between 1-10%  This means she will prescribe Tamoxifen for 5 years after chemo/surgery.  That is no typo - 5 years.
Progesterone Receptor(PR) is negative.

She told me that she wants to start Chemo on May 16th.  Having a definite start date makes this so much more scary.  But before that I need to have a MUGA scan of my heart.  She gave me the number to call and I did and the person making the appointments said there was a STAT order in for it.  It is scheduled for Monday the 7th at 2:15.  I also need to schedule a CT scan, but since I am unsure if I am allergic to Iodine she put an order in for it without contrast, just to be on the safe side (I have never been told I was allergic to Iodine, but I do feel weird after eating shellfish sometimes and have been known to have a rash after consuming too much iodized salt.)

So at least 2 more appointments next week.  I had 5 appointments this week - at $20/copay for each visit it starts to add up.  Not as much as if I had to pay for everything out of pocket, but still an unexpected expense.  I'm also not sure if I will be able to work or not.  I forgot to ask my doctor, but based on talking with other cancer survivors I think the doctors normally take you out of work, and a lot of that is to reduce the risk of infection.  But some people are allowed to work, so I think it also depends on the doctor.  And how I am feeling.  But I thankfully have never had to go out on medical leave so dont know how that works, how long it takes, how much of my current salary will be covered, etc.  At almost 5 on Friday my HR representative was nice enough to give me the quick breakdown and ease my mind somewhat.

I haven't talked too much about this here, but I do also own a business.  And one of my main concerns after I found out the news was that I was worried about the business  I am trying to figure out a plan for how to address that.  I am working on several things, but in the meantime I still have to put some hours in at the business.  I know once Chemo starts that I cannot put any hours into the business, so that is why I have to have a push to get things squared away.  But that is more stress, as if I don't have enough.

Oh and I'm not sleeping well either . . . more stress I don't need.

Marathon Doctors Appointment

I like the idea of having all my appointments back to back to back to back, but man is it difficult.  But cancer is difficult, in more ways than one.

My husband and Dad both joined me at this appointment(on Thursday) so at least I wasn't alone.  I had done a lot of research prior to the appointment and they hadn't, but it is my body so that makes sense.

I saw the geneticist - which was the easiest of the appointments.  He asked my family history and asked if I wanted testing for the BRCA gene.  Only about 5-10% of breast cancer patents have the gene, but why not draw a little blood and give me the results.

Then the general surgeon came in and did an exam and talked a little - it was kindof a blur all I remember her saying is Chemo, at least stage II and a node feels enlarged(yikes!).  I guess I did remember more - she recommended Chemo first to shrink the tumor then a lumpectomy to remove the smaller tumor.  But first is an ultrasound and biopsy of the sentinel node. [please oh please do NOT be in the nodes - pretty pretty please].  We talked lumpectomy vs mastectomy and the survival rate - she said they were the same.  With all things being equal I think I would prefer a lumpectomy.  A lumpectomy does require radiation, while a mastectomy does not.  But I get to keep my nipple which seems to be important to me - It seems trivial, but I would prefer it, even if it means radiation.

Then the oncologist came in and did an exam.  The weird thing about my lump is that it changes size.  I know it isn't "supposed" to change size, but it does.  The ultrasound said 3cm - and it was about 5 or 6 according to the doctors.  Weird.  She told me about the chemo treatments, but since my hormone receptor status was not back she said that will change things.  She also mentioned which ones she was thinking - Start with Adrimycin and Cytoxan for the first 3 months.  I guess it is once every 3 weeks (must be powerful if you only go once every 3 weeks, yikes).  then Taxol(?) the next 3 months.   But that can change based on my hormone receptor status.  I also have to have a heart test because the chemo can affect your heart (oh joy).  And that will change if I am HER2neu positive because that means I will need Herceptin first, but that cant be given with Adrimycin because they both affect the heart . . . got it?  Yeah, right, I understand what I just wrote, heck I don't even know if I got it right - I took notes, but it was a long, information packed day.

She also mentioned several other things that i cannot eat (raw foods, but can eat peeled fruit), stay away from crowds (I forgot to ask if I can work, but I know that I cannot be at WowZville, but i'm sure I'll address that in a later post), and that I have to go in to the ER if my temperature is above 100.5 . . . yikes!  my temperature was 100.1 during this visit, granted I wasn't feeling my best and woke with a slightly sore throat, but still, I regularly have a temperature in the low 99's.

I also asked her about fertility since I have been actively trying to get pregnant for the last 3 and a half years. She said that Chemo can cause you to go into early menopause . . . this can be temporary or . . . permanent.   And if it is Estrogen Receptor positive I will have to be on Tamoxifen for 5 years in which you cannot get pregnant because it will cause miscarriages and birth defects.  And while on chemo you cant get pregnant either - and in fact I will have to take a pregnancy test every 3 weeks (I'm not sure why 3 weeks, but I think it is just before treatment that is every 3 weeks).  Talk about insult to injury.  If tamoxifen is not needed then I may be able to try again after 6months or a year after stopping chemo, but 5 years of tamoxifen put me at 43 and given my past reproductive history (difficulty getting and staying pregnant) I don't see that happening.  I'll have to see how the test results turn out.

Then last, but not least, I met with the Plastic Surgeon to talk reconstruction.  She was leaning towards a mastectomy.  I told her we were talking about a lumpectomy and she was talking about how, depending on the size of the tumor there can be a huge dimple left there.  The most interesting thing she said was that if you do a lumpectomy you have to do reconstruction, or any work before because once you radiate the breast you cannot have any work done.  ever.  The way they get around the missing tissue is to make the other one smaller to match.  I guess i'm lucky I am a C/D cup so that they can do this.  And it seems like they will go ahead and do a little lift too, cause that is the only chance.  But she was recommending a mastectomy which is different that what I was thinking after talking with the surgeon.  Hmmm.  But with Chemo first I am not really thinking too much about that since surgery looks like it is 6 months away at least.

So at the end of the appointment my head was spinning, I was VERY thirsty and I had this box of stuff to take to the lab to have my blood drawn with for the BRCA test.  I did that while my hubby went and got some water from the car.  Then we each drove home.  I was exhausted and ate something and we talked about it a little.  Then I just wanted to not think about it for awhile.  I asked my hubby if we could just watch some tv in bed.  He obliged.

I don't know if this post makes any sense to anyone - I'm not sure I could even get through it, but I feel it was helpful to get it all out there.  I am still confused, but what I took from the appointments was that I needed to have an ultrasound/biopsy of my lymph nodes and we need the results of the hormone receptors before anything is finalized.  More waiting, joy.

Pictures, eeek

Yesterday I had a Doctors appointment - it is in preparation for my bigger appointment tomorrow.  They were gathering some information on my case . . . including pictures, yikes!!!  Yeah, pictures of me undressed - they gave me these little disposable undies and then took pictures of me from every angle - yikes!!!
Then after that I got to walk across a hallway in a gown . . . thankfully they gave me 2 gowns so no free shows.  Then I got to be fondled by a doctor.  Fun times.  The first of many, I'm sure.

I did get a pathology report that said it was grade 3 (the fastest/most aggressive growing kind) and the largest portion was 0.4cm.  I have to ask more about the size because the mass I feel is much bigger than 0.4cm . . . the doc yesterday said it was like 6cm x 3cm  . . . but that could be the fat necrosis??  If the size is 0.4cm, that is really small, which is good.  Definitely one of my burning questions.

Oh and I kindof feel like I am coming down with a cold . . . my throat is a little scratchy, but I wouldnt be surprised given what I have been through in the last week . . . I took yesterday off work and slept until 10:30 which was nice, and I would have probably slept longer if I didn't have an appointment.

Multidisciplinary Breast Cancer Clinic

Repost from my other blog . . .

I have Kaiser insurance and when they called me to tell me the news, they also told me that they have a special kind of appointment where you get to meet with several doctors in one long appointment.  My appointment is May 3rd and I meet with the following doctors:

• 1:30pm - General Surgeon
• 2:15pm - Hematology/Oncology
• 3:15pm - Genetics
• 4:15pm - Plastic Surgery

Sounds like a *fun* appointment.  Better to have them back to back to back and get all the information at one time though. But I am worried about being overloaded.  I will get my surgery date at that time too.

I also have an appointment on Tuesday May 1st with a General Surgeon as an Intake Appointment.

Lump . . . Gulp

A few weeks ago I woke up with a huge lump in my right breast.  I just finished some antibiotic eye drops and thought that might have messed something up with my internal flora, but no.  This lump was weird - it literally came out of nowhere.  I remember it was a Friday and I noticed it as I put my bra on - it felt weird despite being an old worn in bra.  When I moved a little it hurt a little too - cause my breast was so large that the edge of my bra put pressure on it when I moved  a certain way.  I said if it was still there on Monday I would make an appointment.  It gradually got a little smaller on Saturday and Sunday but it was still there on Monday.  I called.

My appointment was relatively soon with a doctor I had seen a couple of weeks ago for an eye stye.  She was also about 6 months pregnant.  She felt the lump and said it was so weird that it appeared so suddenly and that she would refer me for a mammogram/ultrasound but that since it was movable and appeared so suddenly that I shouldn't worry too much.

I made the appointment for the first available timeslot that they gave me.  It was at a very inconvenient time, but I wanted to get it looked at as soon as possible.  My Dear Husband (DH) kept asking me when it was . . . and a couple days before he reminded me that my appointment was coming up (I knew too, but it was nice that he cared).

I go to check in and they give me a questionnaire with some pictures of boobies on the bottom - nice!  since the waiting area is right in the middle of a walkway and is a waiting area for a couple of different areas.  For some reason I thought the ultrasound was first, but it wasn't, the mammogram was.  The technician took me into the room and had me put on a gown.  She diligently cleaned off the machine and explained the process to me.  She then but a bunch of stickers on my boobies - ones on the nipple, one on the lump - and a different one on a mole on my armpit.  I then stepped up to the mammogram machine, um I mean modern instrument of torture.  For those of you lucky enough to have never had one, you put your ta-ta on the table of the machine, then a plexiglass top part comes down on it - and I mean hard.  So hard I let out a whimper each time and was on the verge of tears.  They have to take 4 images - two of each breast.  The first one is just squeezed in there.  The other one you have to lean over and give the machine a hug.  Oh and when it is time to take the "picture" you have to hold your breath.  I'm not sure of the significance of this, but I was on the verge of crying and I was whimpering, both of which stopped when I held my breath I wondered if that was the reason.  Then the machine releases pressure and you can breathe again.  It is kindof like a blood pressure cuff - you know how sometimes the cuff tightens so much it hurts and then when it releases it is like whew.  Only squared.  Or cubed.  Or to the infinity power.

Then the technician said she had to talk to the doctor and that he may want a spot view and for me to have a seat and try and relax.  Yeah, there was no relaxing.  It was more torture - waiting to find out if you were going to have to be beat up again.  If she had said I needed another one I would have started bawling, I just know it (I was on the hairy edge of crying already but managed to hold it in).

I then got to wait down the hall, still in my gown, for the ultrasound tech to call my name.  I normally break out my phone whenever I have to wait, and did this time but couldn't find anything I wanted to play or look at - I just wanted to crawl in bed and cry at that moment.  I settled for staring into space as I very slowly started to come back to reality.

Then she called my name.  I laid down on the table as she did an ultrasound.  I could see there was a black mass - but I knew this as I have a lump that I can totally feel.  She then said she had to talk with the doctor.  At this moment I knew it wasn't good.  Maybe it is because I have never had a "good" ultrasound, but I know when the doc needs to see you it isn't good.  The technician said that the doc wanted to do a biopsy.  OK, that isn't so bad right, then I will know for sure.

So she has to put it in the system and I have to wait in the chairs in the hallway again.  It seemed like a long time, but probably wasn't, before she called my name.  The technician then is getting everything ready as I just chill (yeah right) on the bed and sign a consent form.  The doc then comes in and starts by explaining everything to me.  He thinks it may just be excess fluid and that if he goes in there and can get it all out that he will not even need to do the biopsy.  He also said in cases like mine there is about a 10% chance it is cancer.  Not too bad, huh?

Since my breasts were still sore one of my questions was how much will it hurt - and they use a local anesthetic so all I felt was the initial prick of the needle that delivered the drugs.  Kindof like the dentist - all you feel is the initial needle then they can do whatever and you don't feel a thing.  I was able to watch the whole thing on the screen.  He didn't say so at first, but I knew he was aspirating because I could see the mass getting smaller.  But it reached a point that he couldn't make it smaller even after changing needles.  He then said he was going to do the biopsy and explained the process to me again.  And he was very good about asking if I had any pain.

I was sent off with an icepack in my bra (can you say awkward) and instructions to email my primary care physician to have them tell me the result when available.  Despite feeling like a punching bag/pin cushion I left feeling ok.  I went back to work but couldn't concentrate so I left early.

The next day I got a couple of calls from this weird number.  I had my phone out at work but didn't answer because I didn't recognize the number.  They didn't leave a message either.  I googled the number.  Kaiser Medical.  At that moment I knew it wasn't good.  They don't call you 24 hours after a biopsy to tell you good news.

They called again just before 5pm and I answered as I went into an empty office.  She explained she had my pathology report and they found a carcinoma.  Crickets.  What do you say when they say that to you.  Even though I suspected something there was a stunned silence.  I finally managed to ask some questions, but basically at this point they don't know anything other than it is infiltrating duct carcinoma and she said that surgery will be needed.  I don't know the stage, I don't know if it has spread, I don't know the treatment plan.  She offered me a special kind of appointment - one where i get to meet with different doctors - the oncologist, geneticist, plastic surgeon and I forget the fourth.  At this appointment they will talk with me about my options and we decide on a plan together.  This appointment is scheduled for May 3rd at 1:30pm and I can bring a family member.  She called me brave and strong, but really it hasn't sunk in yet.

When I got home DH asked if everything was OK.  I said no to which he asked why.  All I had to say is "I got my results back" and he knew and hugged me.  That is the beauty of being together for so long - we don't need a lot of words.  And agreed to go to the appointment with me.

Until then all I can do is wait . . . and worry, but I'm trying not to do that.

Re-posted from my other blog . . . I thought given the situation that a new, specialized blog was more appropriate.