New Website

Keep up to date at the new website!!


www.her2andyou.com

Has all the old blog posts and more.  Can't wait for you to check it out. 

Big Decisions

Over the past two months I have been really struggling with why I have been spared from this deadly disease and others haven't.  I mean there has to be some reason why I am still here but others are not, right?  As I look at my life, I have to say, it seems like I am not all that important.  Don't get me wrong, we are all important, but I am not making a difference.  It feels like there has to be more that I can do to help my fellow sisters in this fight...

One of the biggest issues I had after hearing "you have cancer", was trying to decipher what was going to happen to me, and in layman's terms, not medical mumbo jumbo.  I also was desperate to SEE what I was going to look like after surgery (it was the driving force behind starting this blog).  As I kept researching the list of questions became bigger and the answers fewer and further between.  It seemed like there was something missing within the internet.  This only got worse as I progressed further along in my treatment.  It was as if this was a continuous cycle of questions without answers and little help from doctors or the internet.  

In my mind a light bulb went off.

I chewed on this for a bit and then talked to my friend Beth in Indiana.  Beth has become my soul sister since diagnosis.  We have never met but began messaging each other almost daily on Facebook after realizing we had a very similar diagnosis and experienced the same weird side effects.  In one of my messages I expressed to her that I felt we (women with breast cancer that is HER2) needed more resources on the internet that expressly addressed issues that we kept discussing on our private Facebook group.  Beth agreed with me which helped me feel less like a conspiracy theorist and that I was onto something.  

Next up I talked to my husband and brother about the idea (I have no idea how to make this all happen) and they suggested a few things.  They thought it was a great idea so for the last month I have been learning how to create a website.  On the table next to my laptop is a notebook full of ideas and information (yeah it's old school but it can go to all my appointments with me) that I am slowly getting pieced together virtually.  It is exciting, very nerve wracking, and most days makes my stomach hurt more than the medicine I am on, but, I think it is going to help a lot of women if I can pull it all together. 

So what the hell am I talking about right?

I am creating a website that eventually will have content and links that will directly discuss all the things that I wish I had been able to find at the beginning of my treatment.  Specifically I am working on the following right now:

Treatment

Fitness

Health

Fashion

My hope is that I will be able to connect with people more influential than I am that are experts within their fields to help me help my breast sisters.  Why can't we get workout videos online that are focused for women that have gone through a mastectomy?  What is the best diet for those receiving chemotherapy?  Is there a bra that will fit correctly and not rub and irritate scar tissue?  What brands of clothes hide all the scars on your body best?  I realize that for most people this might seem trivial in the grand scheme of things.  My only response is that I wish I had access to something like this in April when I first was diagnosed. 

So...here goes!  The blog and I are moving to https://www.her2andyou.com/ so bookmark it!  Over the next few months I hope to be able to finalize a few things that I have in the works and make more pages live.  Until then keep up to date with me on the blog portion of it.  If you are reading this and are a newly diagnosed, a survivor, or a thriver and feel something needs to be included please send me a message either on the contact page or in the comments.  

As always thank you for your support and love.  

  

Heavy Heart

I genuinely do not know how to put into words how hard cancer is on your heart.  Before I had cancer I felt like I was a compassionate person and tried my best to be supportive of my friends and family that were going through trials in their lives.  Now, after having cancer, I don't know if I had an accurate understanding of just how difficult life can be.

To hopefully make this easier to understand I have a question.  Think about a time when you really wanted something.  Lets say to find love and not be single anymore or to have a baby.  That desire and longing stays with you all day and all night.  Everywhere you go you see happy couples or five pregnant ladies.  It is as if every person on the planet has what you want and it looks easily attainable, right?  

This is a little bit what it is like when you get cancer.  Unfortunately it isn't the sunshine and roses of falling love or the unimaginable joy of getting to hold your sweet baby, it is a fist closed tight around your heart that never fully lets go.  Suddenly, all you see are people that are healthy, people that are able to live their lives without any of the pain and anguish that comes from getting cancer.  Because here is something that people don't realize, once you get cancer you become engulfed in a community of people that also have cancer.  Some of that community becomes like family and they have a disease that is trying to kill them.  It would be so much easier if you only met assholes with cancer but I can guarantee that will not be the case (at least most of the time).

I try not to discuss people by name on my blog because I don't know that they want to be on the internet and discussed publicly but today is different.  Today I am going to tell you about my dear friend Esther.

Esther and I were acquaintances at first.  We met years ago in the locker room after swim practice.  I was hugely pregnant with Brody and she asked when I was due.  That was over 11 years ago.  Though we swam on different sides of the pool every morning we chatted in the locker room.  A few years ago I had to stop swimming in the mornings and though we didn't see each other in the locker room anymore we kept in touch via Facebook.  

After I had received my cancer diagnosis and made the decision to be as open as I could (posting on social media and this blog) Esther sent me a message on Facebook.  As out in the open as I was about my situation, Esther was the exact opposite with hers.  See Esther was also going through treatment for cancer, not breast, and not curable.  That message began the beginning of a very special friendship for me. 

As we continued to message one another we found out that we were both undergoing treatment at the same hospital!  Although we were on different infusion schedules we tried to stop in during each others treatments to say hi.  We started to meet each other for lunch or to grab a coffee.  She said one day we might be decades apart but because of cancer it was so nice to have someone to talk to who just got it.  And, she couldn't have been more right.  

The past month and half we had not been able to get together in person.  She had a family cruise planned and then I was out of town.  We had finally locked down a day for me to come up to see her and I canceled because my diarrhea was insane.  Then the next day we had scheduled she canceled because she wasn't feeling well.  During that time her body had stopped responding to the chemo she was receiving.  We messaged each other frequently and there was hope that she might get onto a trial for a new targeted therapy for her specific cancer but before she could find out she needed an emergency surgery to remove tumors on her spine that were starting to prevent her from walking.  I really don't know what happened during the surgery, it was successful in removing those tumors, however afterwards I never received any more messages from Esther. 

Her closest friend sent me an email explaining that Esther had asked her to keep me updated.  Whatever they had found during the surgery made them decide to stop all treatment.   So, Esther came home from the hospital to prepare the journey that would lead her back to her heavenly home.  They didn't know how long she would have before it took over her entire body but they estimated a week or more.  My only question was when I could come up and see her.  I realize I should have asked more questions about the specifics on what happened but it didn't matter.  All that mattered was that I see her one more time so that I could tell her I loved her.   

I headed to the store and got a mix of yellow flowers, her favorite, and drove to see my friend one last time.  There was so much happiness in her house when I got there.  She was surrounded by an enormous group of people that loved her and there was laughter ringing from every room.  At the center of it all laid Esther in her bed flanked by her husband, children, grandchildren, swim friends, church friends, really there was hardly room to see her!  It was a testament of a life well lived and loved beyond measure.  

It was hard to know that this was probably the last time I would get to see her here on Earth.  I might have held it together while I was in her house but I sobbed like a baby before I could start the drive the home.  It is so bittersweet because I want her to stay but I want her out of pain (ultimately I just want cancer to never have existed or to only infect really horrendous people).  

Last Monday I received word that Esther had finally earned her angel wings.  Naturally I was sad, nothing can prepare you for death, even knowing it is coming.  Yet I am overwhelmingly grateful for the time I got to spend with her and the countless messages we sent that I can read over and over.  She was an incredible woman who took a painful and cruel sickness and turned it into a request from God to fill every day with pleasure and the people she loved.  Man could she make you laugh and bring a smile to your face.  I just have to think of her and I smile.  People always say "she lit up the room" but Esther did.  I will hold my memories of her close to my heart...until we meet again.

Round 13

There is a lot of superstition around the number 13. Casinos in Vegas omit a 13th floor, you need 13 witches to have an official coven, and all sorts of ominous events happen when the 13th lands on a Friday (also the day I met with my nurse coordinator to receive my official pathology of my biopsies confirming my cancer) so it makes sense that this round was a bit different than the others. 

To start off Scott had a business trip to Kuwait so he wouldn't be around.  He would flip out if he knew I posted this picture of him standing in front of the Persian Gulf.  This man of mine hates pictures so what you see below is his very first attempt at a selfie.  Not too bad!

My parents were also gone visiting my older brother in Texas.  Essentially my little team that have my back when I am feeling like crap were all unavailable. 

At my infusion I was assigned a new nurse.  I will be honest and say she tried to explain to me that she came from a different hospital but sadly, I didn't believe her.  First, she acted as if she had never seen a port and kept asking me why I had one.  Second, she "massaged" my port for over 3 minutes.  When I asked what she was doing (hello round 13th, not my first rodeo) she explained she needed to bring my port closer to the skin.  If you haven't looked at my pictures of my port then take another look.  It protrudes out of my skin over a fourth of an inch.  The first time it was accessed the nurse told me how they love ports on skinnier people because they stick out so much like mine making it so easy to access.  After this super odd massage she tried to insert the IV needle.  Aside from the first few times my port was accessed it has not been excessively painful (it hurt those times because it really wasn't healed all the way in my opinion.)  This time it was super painful and I use a numbing cream because why not?  That is me pointing at the cream covering my port.  In this picture with cream all over it and a plastic bandage you can see it looks like a lump on my skin, not flush, or even buried deep down under fat or tissue. 

Once the needle is inside the port they have to flush the port.  When this happens you get a very odd metallic taste in your mouth.  In addition you do not feel the fluid go into your body because the port goes directly into your vein and then very quickly to your heart.  As she attempted to flush my port I could see my skin around the port creating a small bubble and I could feel the liquid because it was cold.  I really didn't want to be rude but was freaking out that she was going to actually have the medicine just drip inside my body, so I told her I didn't think it was actually in my port...

The first time I said something she didn't listen and kept pushing more fluid from the syringe.  The next time I said something she gave me a big explanation about how there was too much blood coming back in the return and I needed to lay down so she would be able to access the port properly.  According to her every nurse should have had to make me lay down because my port was so far under my skin.  Please imagine a look on my face that says WTF.   Thankfully she had to leave me alone for a few minutes because I was now bleeding all over the place and that needed to stop before we could actually begin the infusion and get a new needle in the port.

Thankfully the nurse went and talked to another nurse outside of my room that I had infuse me before.  They spoke and then the nurse came back with all new needles, syringes, bandages and saline.  Did I think this was going to go well? NO, but I was hopeful.  After another 8 minutes (this usually takes about 8 seconds) the needle was finally in correctly (it hurt like crazy which is still a little unbelievable to me) and I could start the actual infusion...39 minutes from when I sat down in my chair.

It has been a week since the infusion and so far the symptoms for me are the same; a gnarly amount of diarrhea and  really intense stomach cramps followed by nausea. Though I feel like the nausea is not as prolonged this time around and is a little less sever in the morning but seems to pick up around noon and hang outs all night.  There is also this exhaustion level that I cannot seem to kick no matter how much I sleep.  All in all I am getting super good at hanging out near my bathroom!

My acne rash is still here even with all the medicine we switched too about three weeks. I feel like this is also something that is going to be with me until I finish all of the chemotherapy drugs.

I do not know if this is getting easier.  If anything I would say I am getting used to it, even immune, or just more accepting of how things are.  Do I think there will be a day that I have a solid stool?  Truthfully it doesn't seem likely.  However, if my oncologist felt I needed another 20 rounds of chemo to prevent this cancer from coming back I would gladly take it. 

"I Don't Know"

If there is one common theme in my life it is that I am a bit of an odd ball in the medical field that gets unusual side effects from medicine.  Really this is not a joke or being sarcastic.  Check this out...

1.  At 11 we discovered I had a bleeding disorder.  It was genetic.  Neither of my parents have it (Yes they are my biological parents I've done 23 and me, ha!).

2. After the birth of my last child the bleeding disorder disappeared but knew symptoms popped up
and led to the discovery of my having PCOS.  My endocrinologist was baffled that I had 3 children.  (I filled out a lot of research studies after this).

3. I got breast cancer at a young age and have no genetic link.  (Common misconception is that breast cancer is predominantly genetic, it isn't, however under 40 it does account for a majority of the cases.)

4.  While on hard chemo I had odd side effects that my ONC would say she had never seen before in a breast cancer patient on that specific chemo regimen.

So why I am still surprised when another doctor tells me they don't know what is causing something to happen to my body!?

I am just accepting that I will have diarrhea till I am done with chemo.  Fine.  I can stay in my house and near the toilet till the end of May.   Annoying?  Yes, but let the drugs do their job so hopefully I am only in this position once.  Do I wish that the constant bathroom breaks would be giving me a svelter figure?  You bet your ass I do, but some how this is NOT happening.  All I can say is, LAME!

One thing I am not willing to accept is the acne rash.  It is back and horrible on my chest but all over my chin too.

How can I explain how utterly devastating it is to wake up and look in the mirror at a person that is so hideously ugly.  Before anyone sends me a message to tell me I am beautiful please image all of this happening to you...

I've lost my breasts.
I've lost my hair.
I've lost my eyelashes.
I've lost my nose hair (something I never thought I would be upset by but I am and I desperately want them back).
I've gained over 20 pounds.

I am grateful to be alive.  Heaven knows I am...BUT I also don't know who the person is in the mirror.  I can't accept that when this is all over my face and chest is going to be covered in acne or scars from this rash that has taken over my body.  I feel as if I am mourning the outer beauty I once had.  And let's be totally honest here I wasn't some drop dead super model, my personality it really what makes this package, but I wasn't a total dog.

My eyes are nice, but without eyelashes they scare me (I wear fake ones now).  My face is decent but not with the acne rash covering it or the scars and discoloration that will be left after it goes.  My hair, oh how I miss my hair.  It is slowly growing but all that has done is make me look more like a teenage boy.  I think the only thing going for me right now is that I do have boobs...that are 100% fake.  So the best part of me visually is not even me.  That sucks.

It seems like I should be able to fix the things bothering me which is why I am irritated that I can't find a doctor able to tell me why I am getting this acne rash.  Just another reason for people to look at me and go through this list of questions in their head:

1. Is that a teenage boy?
2. Is that a young man?
3. Is that a woman transitioning to a man?
4. Is that a man transitioning to a woman?
5. Is it just a very masculine looking lesbian?

I don't care if someone is any of the above and I will tell you I have so much more empathy for people in the transgender and homosexual community because people really look at them differently.  I am just a woman with cancer.  There were a few months when I was totally bald that I could tell people understood it was cancer because you get the pity look.  Yet once that hair started to sprout in it is just utter confusion on peoples faced and I just want to slap them.

Mainly I want to look like me and I fear that when all the treatment is done I am going to have to re-evaluate who the person in the mirror is again.  Back to the reason for this post, the rash.  I was able to get into see a dermatologist this week.  He looked at me, pictures of me, asked about all my treatment and medicines, spent half an hour researching my chemo meds and then decided he really isn't sure what it is.  The decision is to try a few different avenues.  First, we are switching my allergy pill to see if this will help if it is an allergic reaction.  Second, we are increasing the antibiotic I am taking for the acne so it covers if it is just rando acne that has suddenly decided I need.  Third, we are trying out a different topical cream in case it is something developing from all my skin changes due to chemo.

Is this working?  It has been two days so far and the answer is no.  As with most things it is going to get worse before it gets better according to the doc.  Let's just all cross our fingers it doesn't.

Last night I told Scott I am going to have to save up money to have some sort of facial to get rid of all the scars and discoloration when this over.  Cancer ages you.  Well, it is aging me.  The stress, the medicine, everything takes a toll on you in ways I think I am still struggling to comprehend. I am grateful to be alive, I know that this is not always the outcome, but I also want to figure out how to get back to being a version of the person that I used to be.  That is the real struggle these days.

Foob Update

I have been waiting to do this post until I was done with all the post op appointments to make sure everything was good with the new foobs.  Last week we met with my plastic surgeon for the last time.  I have to say I am going to miss him and his nurse so much.  I told Scott I might need to start thinking about actually getting plastic surgery so I can keep seeing them because they are the greatest team I have worked with.  

Just know there are a few foob pictures in this post at the bottom so if you don't want to see them feel free to skip this one.  They will probably be the last pictures I post of my physical foobs because I think Scott is uncomfortable with them being on the internet.  Well unless I decide to do the nipple tattooing which at this point I haven't decided.  It is just more doctor visits and possible complications.  

Foobs are really odd appendage.  Where breasts made me feel like a woman, attractive, and attached to my sexuality I don't get any of those feelings with the fake things.  What I don't think anyone understands but me and my fellow breast cancer survivors is that there is absolutely nothing sexual about my foobs.  First they are 100% fake.  Every part of what looks like boob is completely man made, not created by God.   There is 0 breast tissue left in my body.  In fact my friend said my plastic surgeon is a "breast architect" and that is about as accurate a statement as I can come up with for what is sitting on my chest.  It is really astonishing what science and medicine is capable of these days. 

I have had my breast skin, tissue, and nipples fully removed.  The expansion process then allowed my skin to stretch enough to make room for the plastic surgeon to have space to put something in to create the shape of a breast.  I opted for silicone implants and my only request was that we get as close to what I had before and make them softer than the expanders.  Those bad boys were HARD!

Due in part to my age I was able to get my skin stretched pretty close to the size of breast I had before cancer.  Once you get rid of all your breast and associated boob stuff (tissue etc) nothing is referred to in cup size.  You don't have boobs so it is all medical terminology.  My expanders were filled to 485 cc's.  To buy a sports bra to fit them I needed a 36DD.  I was not a 36DD before cancer.  I was a 34C.  So they seemed enormous.  Remember I had this hard circle like expander inside my body that needed to stay in place to stretch the skin so there is no "squwishing" your expander into a bra.  

Going into the exchange surgery you don't know what size implant is going to fit, it is an estimate and you have a range of sizes that enter the room with you.  When it was all said and done I had 500cc silicone implants put in plus fat grafting to create a more natural looking shape.  For now I don't really know what size they are.  That sounds odd, I know, but you have to wait about three months for everything to settle and swelling to go down after the exchange surgery.  Judging by looks and feel they seem close to my size before cancer. 

It could be my memories of the expanders are too fresh but the foobs look real.  They don't look like fake boobs to me.  Never planning to have a boob job I had some very real fears that I was going to look very unnatural.  It was irrational but I didn't want to look like I had fake boobs or was a pornstar.  It is just not me.  My plastic surgeon really listened to what I wanted and did a job better than I could have hoped for.  When I see women that have had breast implants their boobs look enormous.  Very wide, very high, very hard.  I guess sort of how I felt my expanders looked.  I think this is because they have actual breast tissue inside still.  Since I have none of that and the implant is under the muscle the foob really does look more natural.  I don't know.  This is a completely stupid trivial "thing" to have been worried about...but I lost sleep over what the foobs were going to look like.  My advice if you are going through this is to make sure you are very vocal with your plastic surgeon so he or she knows what you are hoping to achieve.    

I was very lucky that I didn't have any complications but it is is also due to following the restrictions and having such a big family to help me out.  Though I am still not cleared for full activity I am able to do a little more than walk and am back to doing all my stretches again!  As of today I do not have my full range of motion back but I am getting closer each day.  Hopefully I will be able to start swimming in about six months which should help a ton because my chest muscles are so weak (they did cut into them twice so I shouldn't be surprised but I am). 

Side note.  If you are wondering why my implants are under the muscle and not sitting on top it is because this pushes everything closer to the skin.  As life goes on and we continue to monitor my breasts for cancer recurrence it allows any new tumors to be closer to the skin therefor easier to detect.  Because I have no more breast tissue I can not have mammograms, all of my exams will be physical exams with my general surgeon and oncologist.  

Alright time for  the pictures.

First is the picture before I went back to surgery.  My doctor had marks all over my body.  Like everywhere.   Remember all the bruising from the fat grafting a few posts back?  Yeah there was marks all over my thighs and lower abs too but I feel like you get the gist with this one image.  Look at those expanders!  I do not miss them.  Loved having them so I could have a foob but good riddance.  Can you see how far over towards the outside of my body those rock hard rounds are?  This is part of the reason I had so much anxiety about the foobs looking super unnatural.  My old cancer infused breasts did not hang to stick out to the side of my body.  

This is about two weeks after surgery.   You can see they look softer, smaller, and are less towards the edge of my body.  I still had bandages on them because they just glue you back together in hopes of minimizing scaring.

Round 12

Friday I got my 12th infusion.  It was a little sad while I was there because most of the patients that I have continually seen at each treatment were missing.  Since I am far from quiet it didn't take long for me to get to know a handful of other people going through similar experiences.  Ironically not everyone in the infusion center is getting chemotherapy, nor do they have cancer, yet the only people that I have got to know are all there because of cancer.  The majority of the people I have met are women, over 60, and unfortunately stage 4 for whatever type of cancer they have (none have had breast cancer they range from brain or liver to colon or blood).   Almost every first meeting was the woman approaching me to ask how old I am.  It is obvious I am there for chemo because the bald head gives us away.  They always tell me they are so sorry that I got cancer because I am so young. 

These women have become my friends over the past nine months.  I worry about them, my kids and I pray for them, and I anxiously await the day of my next chemo appointment in hopes that when I go around the corner one of these women will be sitting in a chair receiving her infusion.  And this time none of the women were there.  Two weeks ago one of these women that I call my friend reached out to me in between treatments to let me know that the chemotherapy she was getting had stopped working and her tumors were getting bigger.  She wanted me to know and I am hopeful that I will be able to go visit her at her home this week (I tried last week but she was too sick for visitors).  This was fresh on my mind as I looked around for any of my friends before my infusion and one of the reasons I was so sad when I didn't find a single one of them. 

The obvious reason that none of them were there is that they were scheduled on a different day, or at an earlier or later time.  But with all of them being stage 4 the chances are slim.  Since it is medical information no one can tell me how a patient is doing but they could tell me if they had been in or not.  None had.  I left notes for a few of them and asked if they would give them to the girls if, or when, they came in.  Most of them don't have social media or text and those whose numbers I have are terrible at returning phone calls!

I just hate cancer.

So my infusion actually went well.  The targeted chemo is suppose to be easier on my body however it is tearing up my insides.  I have taken more anti-nausea meds with the targeted chemo than the harsher chemo (really I felt better on the harsh chemo than the targetd, now I just fill sick all the time).  When I wake up in the morning I can't eat anything until about lunch time until the week before my next treatment.  It is a bit like morning sickness.  Another weird thing is that the targeted chemo is not suppose to effect my taste buds or eating habits it does seem to be.  Two nights ago Scott took us to go get ice cream (I don't remember why, a celebration for something the kids had done...my brain is stupid these days).  I got one.  Within 45 minutes of eating it I was on the toilet 6 times in less than an hour.  Needless to say we both decided maybe I should lay off ice cream until I am finished with all chemo. 

I have also had a significant increase in migraines.  Since switching to just targeted chemo I have one a week, MINIMUM.  They suck so bad and the migraine pills don't seem to stop the pain or the weird vision issues associated with them.  Oh and since we are talking about vision that is messed up too.  I can't decide if my prescription has changed all of the sudden or the chemo has done something to my eyes.  I am constantly needed to rub my eyes to relubricate them and blink to get my contacts back to the right location on my eyeball so I can see.  You might think, "geez Alicia just wear your glasses dingbat!"  HA! I have tried and it is the same.  I have to keep; blinking and trying to focus even in those.  The solution is to just go to the optometrist but I feel like it is a direct correlation to the medicine and I need to wait till I am finished.

The most recent reaction I have had is a weird rash that has showed up on my chest.  I will post a picture below this.  It showed up Friday after my infusion first just as a red mark from my port down in between my foobs.  It is kind of hard to see it in the picture but it looks and feels a little bit like the acne rash I got after my first infusion.  Trying not to be a crazy hypochondriac I have been just watching it for the past few days but it is getting more raised bumps.  Today I decided to send the oncologist a message because I want to make sure it isn't going to spread like last time and I have a sneaky suspicion that it is creeping up my neck and onto my chin already.

I only have four more infusions to go so hopefully new side effects will just stop already!!!  Though my track record makes me a little nervous as what is going to show up after the next one.