Wigging out

Every day since my last post my head has lost more and more hair.  I don't know how else to describe having my hair fall out except pretty darn amazing.  There is nothing to compare it to.  It is unbelievable how quickly Chemosabe infiltrates your entire body and manifests itself.  Within hours of the hair starting to shed the health and vitality of my hair disintegrated.  Right before my eyes my hair went from volume infused fluffy hair to a pile of flat, limp, lifeless hair.  If Chemosabe can kill can cells as fast it kills the hair on my body then bring it on.

First up was wig shopping.  I am still uncertain that I will wear a wig but everyone thought I should get one just in case I did decide that I wanted to wear it.  So on Wednesday my sister Alexa, my mom, and I went to a store in Modesto that Alexa's hair dresser, and also one of our employees fiance recommended.  Honestly it was a lot of fun and I was not expecting that.  We all tried on a bunch of styles and in different colors.  I found out that I look so much better with brown hair than any other color.  Also, we learned that Alexa is way closer to Deni's coloring and looked great blonde.  My mom can not gray yet because she doesn't look like herself at all but she can pull of blonde as well as my sisters!  In the end I bought one wig and my mom bought two!  Alexa almost got one but with the new addition of her puppy Ryan put the cabash on that.  

My biggest concern about a wig is that people will look at me and know it is a wig.  I just feel more comfortable embracing the changes taking place with my body and not trying to hide behind anything.  So I have cancer and no hair, who cares?! I'm getting the treatment I need to live if someone wants to stare at my bald head, my even changing breasts or any other things going on, let them.  I decided with the help from Lex and my mom that this wig was the most natural looking.  The ones that were closer to my original length just looked to fake to me.  In the end I am pretty happy with it.  Scott took me out dinner that night and I got all dressed up; wig on, full makeup, dress, jewelry.  It was worth the smile on his face to see me. 

Hair Today Gone Tomorrow

Everyone told me that I was going to lose my hair; my surgeon, my advice nurse, my oncologist, every woman I met through the Young Survivor Coalition, plus all the blogs and research studies I read.  It was a known side effect that I have prepared for, hence the numerous hair cuts to help both my kids, and let us be honest, me.  Though even with all the knowledge of what was to come, all the preparation I have done, nothing can really prepare you for your hair falling out the way it does from chemo.

On average most women on the regimen I am on start losing their hair 12 to 13 days after their first infusion.  For me that was June 6th.  Well June 6th came and went with little fanfare from my hair.  I might have internally high-fived myself and thought I was going to be one of the women that miraculously holds on to her hair longer than others.  Then June 10 arrived.

When I woke up Sunday morning my head felt weird.  The top of my head was hurting, like after you have had a super tight pony in for too long and you take it out.  Obviously I did not have a pony tail in.  There were pins and needles dancing all over my head all day long.  I noticed that my hair was sticking straight up in the back so I reached back to pat it down and a pile of hair was left in my hand...

That isn't normal.  I freaked out a little and decided I would just rock the Alfalfa look from Little Rascals and go about my day.  My scalp hurt all day but I never touched my hair again.  It could be a fluke right?!

Monday morning I awoke to hair all over my pillow.  I didn't get a picture because at first I thought there was a spider in my bed and started trying to kill it before realizing it was massive amounts of hair, oops!  All day yesterday I kept feeling hair tickle my neck, my arm, and my back it was so annoying because most times those short little hairs were right where I couldn't reach. 

Then something really fun happened.  I had to go the bathroom.  No pictures here because that would be NASTY but let's just say I am losing hair EVERYWHERE, and some places, much faster than the top of my head. 

Today while I was working I made a pile of the hair that was stuck to my shirt.  The image below is the shedding I collected.

Pretty sure this means my last hair cut is happening real soon folks.  The next big question is will I lose my eyebrows, eyelashes, and that one stubborn chin hair... 

Pep In My Step

The past few days I have felt pretty amazing.  To start, I don't feel sick!  I am hungry (as in ravenous), I spend way less time in the bathroom (hallelujah), and I am gaining a little bit more mobility in my arms.  All in all a great week for me.  But even with all of that the best part is that the rash/acne has receded which made the unbearable burning and itching disappear (prayers answered).  That has been the greatest highlight this week.  

You can still see the rash if you zoom in but nothing like what it was five days ago.  That is little Miss Emmy and I.  She is pretty happy when she gets to have a little alone time with me, especially since it hasn't happened much in the past two months.  Best part for her is my incisions are healing enough for her to hug me.  I can't feel it on my chest area still, perhaps I never will, but her little arms around me is all I need! 

 

17 Again, Seriously?

Yesterday I saw my oncologist.  She wanted to meet to go over how I handled the first round of chemo.  I wanted to meet to rant and rave about the stupid rash that is refusing to go away.  Scotty and I headed off hoping for an easy answer and remedy...

Here is what we found out:  She has never seen a rash like mine before especially with the specific cocktail I am on...lovely.  She is also not certain it is even a rash....awesome.   BUT she has seen a few times, only in her breast cancer patients under 40, for the drugs to cause an acne reaction to occur...fabulous.  Just for those wondering there is a chemo regimen that you do get acne with, just not mine. 

So one of two things could be happening.  First, I am just a really odd chick whose body freaked out and decided the best way to handle all the toxic chemo is to try exuding it through the pores of my upper body and face in the form of fire burning acne.  Second, I am allergic to the chemicals in one of the chemo drugs.  If it is the second then we will have to remove that drug and try a different drug but she doesn't want to do that because the specific drug I am on is what helps to make my combination of drugs more successful with HER2+ breast cancer.  There is also a possibility that the new drug we could try, because similar to the old drug, would have the same allergy and we would have to remove that from my regiment, which no one wants to do.   Moving forward we are going to treat the rash as acne with an oral and topical antibiotic.  Never ever thought I would say this but I am hoping it is acne because I want this cancer shit dead and gone. 

Does anyone remember the movie 17 Again starring Zac Efron and Matthew Perry?  This is sorta how I feel my life is at this moment, only I am 37 experiencing the symptoms of puberty all over again.  In all seriousness I was secretly hoping that the upside to this cancer crap was that I was going to get to be reborn, a fresh start, and my hair would come back in thicker.  I still have faith all of that is going to happen however,  I didn't take into account I would have to start at the baby stage and take a detour at puberty before ever getting close to reaching my current age.

What the heck am I talking about right?  Explanation.  Let's start at the beginning shall we. 

First was the mastectomy surgeries.  I was so weak after those that I couldn't do much beyond sitting down and standing up on my own for days.  Every thing else I needed help with and I mean everything...sound like a baby? 

Next I graduated to being able to shower (best day ever still), pull up my own pants, and open the fridge....toddler stage minus emptying out the Tupperware cabinet. 

Then Chemosabe came to visit right around the time I hit my tweens and the crapola hit the fan.  Now my noobs are getting filled up into foobs (fake boobs) so they are for this analogy, growing, and I have raging acne all over my upper body and face...welcome puberty and teenage years. 

The only thing I am waiting for at this point is my hair to fall out...skip the whole middle age thing and go right to the senior years I guess.  Life cycle complete at this point.  Next step starting over healed.  It's going to be a long year. 

Caps

I have tried to write this post since Saturday but each time I sit down to try ugly tears take over, a bloody nose begins, and I am forced to stop to get myself under control.  A bit of history for those that don't know me, I was a swimmer and in my heart I will always be one.  My kids got the bug a few years ago to start swimming, against my own wishes, and now the rest is history.   Our summers are spent on the deck of a pool and I would not have it any other way.

The rash that overtook my upper body sent me into a bit of a funk.  First it was painful, second it burned, and last it looked horrifying.  I was not in a good space mentally either as my mind kept filtering images of my face with different levels of scars covering it.  It was not the best week of my life.  Then Saturday morning I got this text from Scott...

...and was reminded that my focus was way off.  I may never, ever look the same but who we are inside is so much more important.  It took this to slap me silly and remind me that kindness is what makes us beautiful not the image in the mirror.

Two mom's from the team had got together and ordered custom caps for the relays that my kids were on to wear at the meet.  I want to say it was thoughtful but that word is so small for what they actually did.  Like any good team does in times of crisis, they rallied.  They rallied my children, my kid's friends, the families that are helping hold up my husband and kids at meets without me, our team, Scotty, and me.  The cap is such a small gesture but the number of people wearing them was staggering, hence the ugly crying.  I still can't stop crying typing this now and it is almost a week later.

This is the 7/8 girls medley relay, plus Emmy and her BFF Bailey.  They got first!

Above is Reyna and her 9/10 medley relay, who also got first!  Below is Brody and his buds on the 9/10 medley team.  Like the other two relays they got first as well.

If you have been following this blog you know that from my diagnosis things have moved with exceptionally fast speed.  For me it has been fabulous but it means that there was not a lot of time to tell everyone that I probably should have told.  Numerous parents didn't know that I had cancer.  One mom even came up to Scott and said, "It all makes sense now; she isn't the team photographer, her hair was short when I saw her, and you are always around!"

Life is funny.  Before cancer I would have said I am pretty isolated in my life meaning I don't have strong relationships that I can spend lots of time nurturing.  After my cancer diagnosis I would say that a lot of us probably feel this way as life is busy and when we add kids, a spouse, and a job there is little time for more.  Now I know that every conversation is meaningful, every bit of time shared with others, no matter how long or short it is, is worthwhile and that you really have no idea how much you really matter to others.

My love of swimming and the sheer joy I get out of watching not only my kids swim, but every kid on our team, makes not being at the meets a painful pill to swallow.  It is nice to know that there are so many people not only cheering on my kids but me as well.  For those wondering Ripon won the meet!  I am honored, beyond measure, beyond words for the support that I have received from the people on our team.  I pray there is a day that I am strong enough to give it back tenfold.  To Priscilla and Kathleen, thank you from the bottom of my heart and the depths of my soul.

Rashes, rashes go away

I am over all the rashes from different medications!  Before the cancer diagnosis I rarely took medication so allergies to drugs were unknown to me.  Since cancer it seems everything I am prescribed I am allergic to.  Needless to say my level of frustration is at a 12 out of 10.

The rash that started on Monday has gotten worse and is extremely painful.  Like every ear infection your kid gets it starts at night, on a holiday weekend, and  my rash followed this same plan.  I talked to two advice nurses, an emergency room doctor, and an on call oncologist in 48 hours.  Each gave the same advice, take benadryl.  Each time I talked to a different medical person they upped the amount and frequency the benadryl should be taken.  By Wednesday I was taking 50 mg of benadryl every 4 hours.  Easy way to describe where I was at is a catatonic state and in the end no change in the rash.  I was (and still am) miserable, and exhausted, because though benadryl makes you drowsy it doesn't make you fall asleep. 

Yesterday I had scheduled appointments with the plastic surgeon and a chemo orientation class.  I see the irony in a chemo orientation class after I already had chemo, imagine me shrugging my shoulders with my hands raised up.  My mom wanted me to cancel the appointments because I was a complete zombie, but I refused.  There is almost nothing to look forward to in my life these days.  Behind each turn is a door to another doctor, another procedure, another poke, another prod, another chance to be told they found something else.  However, the plastic surgeons office is my fun place.  It is the only thing in my life that is helping me regain a small part of me.  I feel so little like a woman, like the me I used to be, and he is helping me get a small portion of that back.  It is going to take a whole hell of a lot to get me to miss one of those appointments.

The plastic surgeon is awesome and he says my incisions are healing great.  Most likely I will be able to wear a sports bra soon and remove the corset I have been in for five weeks.  Something else to look forward to soon!  I got another fill in my expanders.  For those keeping count that is number 3.  Because of my small frame (something I never thought I had) and my lack of body fat (not something I would have ever claimed) I will probably only get about 6 fills.  Any more than that would most likely be too much for my body in size and stretching.  That means I am half way done with the expanding part.  This is both exciting and scary because it means we are getting closer to planning another surgery even though it will be further down the road due to chemo. 

We had about two hours from that appointment and the chemo class so I decided we were going to try to talk to someone in the infusion center to get SOMETHING to help me.  It was lunchtime but I got a janitor to bust in the doors and bring a nurse out to me.  Thankfully she took one look at me and decided to help.  She called the on call oncologist, who had no openings, but recommended that I see an adult medicine doctor.  There were no openings with adult medicine but the nurse got them to agree to put me on a will call schedule if I was willing to sit in the waiting room and wait.

I am only posting the pictures of my face.  You can all imagine it on my neck, shoulders, chest and back on your own.

It took over three hours but I finally got to see the doctor.  He was brutally honest and explained he didn't know if he would be able to help me, the best doctor for the job was an oncologist but that wasn't an option for me.  After he looked at me he said he was originally going to prescribe me a big shot of steroids in my butt but after seeing my face, neck, shoulders and chest he didn't think it was an allergic reaction, like hives, but an allergic reaction in the form of acne.  If you give steroids to acne it makes it worse.  Also, since he didn't know what it could be he researched all the medicine I was taking and the chemo combo I was given and felt it was most likely from the pre-chemo drugs.  Again, he wasn't sure what to do and didn't want to give me something to make it worse or false hope.  The best option was to take pictures and send it to a buddy of his that was a dermatologist.  I figured I was getting the blow off and wouldn't hear from the guy again but by the time we had walked from his office to the car he called me. His friend said I should start taking an antibiotic twice a day.   It has only been 24 hours and there has been no change.  Not true, it is itching more today than yesterday. 

In all the appointments, research, and information given at chemo it was never mentioned to me that I could end up with raging puberty like acne.  Plus if they had mentioned that I would have loved to have been told that it would introduce itself by intense heat induced pain followed by burning bumps that itch.  I didn't have acne like this growing up, so perhaps I am just naive, but it is not like I remember any acne I had before. 

So what in the world could the silver lining be from this side effect?  Nothing obvious to me so I have been researching for days.  I found a study today that showed that patients that had acne like allergic reactions versus measles like allergic reactions to chemo had higher success rates of killing off cancer cells more efficiently.  I told my friend Miranda that this is what I am holding close to my heart right now because if this is wrong it means I am slowly turning into a teenage boy and I am against that...adamantly against that.  Her analogy was that I am a caterpillar growing into a butterfly.   I desperately hope that is true.  Though truthfully I told her it could mean I end up a moth in the end but like a true friend she decried that with science; apple doesn't have a moth emoji so it is impossible. 

Until the medicine starts to work, or I get to actually speak with or see my oncologist, I will continue to attempt to not scratch my face.  All I need is scars covering every inch this rash is touching when I am finished with these treatments. 

Chemosabe is a bitch

One down, five to go.

Sorry for the language but it's the truth.  Chemosabe is never going to be my BFF, if anything the relationship will be more "frenemy" than friend.  But most relationships, good or bad, have a specific reason for existing.  With Chemosabe and me its a mutual effort to keep me alive for a long, long time.  By keeping that in mind I am pretty much willing to put up with a whole hell of a lot.

As I said in the last post Chemo was scheduled for Friday.  I was a bit nervous and had done lots of research to find out all the things I might need during the infusion.  This resulted in us looking like we were heading to a swim meet instead of an appointment for me to sit on my butt for over 5 hours.  The nurses all got a good laugh out of Scott being my pack mule when they brought us in and they teased us about being obvious first timers.  In my defense when I am unsure I tend to over prepare, it's a solid coping mechanism.  

The actual infusion was pretty painless.  I have my port so that made it easy.  The hardest part was seeing how many patients were there getting treatment.  It was a revolving door of infusions for people with cancer and I was the youngest one in that room.  Facing the drastic age difference at each appointment is really hard for me to get a handle on.  Part of me is grateful I got cancer while I am young because I have youth in my favor, at least that is what the doctors keep telling me.  The other part of me knows that the reality is I could have a shorter life than I have ever imagined possible because Cancer is a sneaky bastard.  

My first treatment I knew was going to be long and during that time I had 4 roommates.  I'm a friendly sort and was a little bummed that none of my roomies were chatty.  But then they were there for an hour or less and I was in for the long haul.   We started off with Herceptin, the medicine I will be getting for a full year.  That had to be administered over almost two hours.  Out of the three medicines in my cocktail H is way less toxic.  It was pretty obvious how much less toxic it was when the nurse went to put my next medicine in the IV and had to be dressed in an additional apron and extra thick gloves before she could even touch the bag that the medicine was stored in.  The additional two medicines, "T" and "C", the nurses had to get all dolled up to administer.  So yeah, that is scary.  They get numerous trappings to protect them and I get it shot straight into my veins.

During the first treatment the biggest concern is allergic reaction so I had to be observed for a little while. I seemed to be okay so we got booted out after almost 5 hours.  The only thing I remember feeling during all the infusions was cold.  When I got home all I remember thinking was how incredibly tired I was from sitting on my tush all day!  I slept a lot Friday.  Honestly I don't even know if I ate anything for dinner?   But so far no vomit or diarrhea.  OH FUN FACT!  Once you get a chemo infusion they ask that you flush the toilet two times for 48 hours to make sure that all the toxins that came out of your body are completely gone from the toilet...chemosabe is one hard bitch to flush out.

Saturday I was exhausted, (this will be a common theme as I am typing this on day 6 and still feel just as tired as day 1), had serious stomach cramps, my head was pounding, and my face was on fire.  I was able to eat and drink fine this day.  Then Sunday arrived.  Sunday I woke up with my face, neck and chest burning.  When I looked in the mirror I had a rash covering each of those areas.  It was bad to my eye.  My face still looks like I hit puberty in the worst way.  There are too many red bumps to count and some are hive like.  NOT.  FUN.  I told Scott I would rather vomit than have all these painful bumps on my face with a constant burning sensation.  We called advice nurse because it's a holiday weekend and they suggested taking Zyrtec during the day and Benadryl at night.  In case you are wondering, that combination is not doing a damn thing.  

From Sunday to Monday I had the same side effects; exhaustion, stomach cramps, face burning,  rash, head itching, and then diarrhea and nose bleeds decided to make an entrance.  Thankfully (I guess) it wasn't like the movies portray it but still not a walk in the park.  Tuesday morning I woke up at around 3 am ready to rip my stomach out the nausea was so bad.  My mom and Scott wanted to take me to the ER because, according to them, I looked like I was dead and moaning like a zombie.   I popped one of my anti-nausea pills and fell asleep for three hours.  Once I woke up I felt pretty normal.  Thank the Lord for modern day medicine and the minds that have studied and researched to create it.  

Today is day 6 post chemo and I sort of feel like myself minus the rash and burning sensation.    I am really hoping that I can get something stronger for the rash.  Seems dumb but I think that is the hardest side effect.  My face, neck and chest are just killing me.  Hopefully before the next infusion my doctor and I will be able to come up with a new medicine to help prevent that reaction.  Then again if that is the harshest side effect I should count myself pretty darn lucky.  I will keep my fingers crossed that the flu symptoms stay light, I do not get any mouth sores, and I am able to keep eating.  

My friends, Megan and Jodie, gave me this shirt the day before chemo and I felt it was pretty appropriate for my first infusion.  If I have learned anything over the past 6 weeks it is that my body is not complete.  There is so much work to be done, both inside and outside, but in the end I pray my body will be healthy and healed.  I know that I will never look the same, or be the me I used to know, but I will be alive.  For the time being "under construction" seems to be right about where I am in this process.