"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.

Christmas Present

My family draws names for Christmas.  I mean come on!  The size of our family alone makes is outrageous to buy for everyone.  Not only does it get expensive but it was starting to become an all day event.  So a few years ago we went to drawing names.  My sister Alexa was not really okay with that and continues to give small little gifts each year.  This year when she did it I thought we should start doing that too!  

I hadn't bought anything on Christmas morning when we were all together but we actually didn't fully celebrate Christmas on Christmas.  My oldest brother lives out of state and his son had a band event right before Christmas.  We decided to all wait till they got here to exchange gifts so I had time to figure something out!

Reyna had given me this beautiful Hallmark angel ornament that was for breast cancer on Christmas and a portion of the profit was donated to breast cancer research.  Each year I get an ornament that has to do with something that happened during the year and save it for my kids.  One year we were Inside Out for Halloween so I got each of the kids an ornament of the character they were.  My hope is that one day when they have their first Christmas tree I can give them a box of ornaments that represents memories of their life.  I told Scott I wanted to get the kids this ornament for this year.  He said they had to go all over to find the one that they got me and it was the only one.  It didn't look good.  

However, a day or two after Christmas we went to the Pleasanton mall with my older sister Deni and her family and the Hallmark store had all kinds of breast cancer stuff.  The kids found necklaces they wanted and bracelets.  Low and behold there was a few ornaments sitting there!  I grabbed three for the kids and gave them to Scott to buy.  He looked at the box and said maybe we should get my parents one.  So I went back and grabbed one for them.  He took that box and said maybe we should get everyone an ornament.  After all cancer has changed my entire family.  I looked and Deni and asked if she would put it up or if it was weird.  She thought it was a great idea so I went back and dug to see if they would have enough. This meant I needed nine ornaments.  Guess how many breast cancer ornaments they had left?  That is right, nine.

When we got together to exchange gifts I stood up and said that I had bought something after Christmas for each of the families.  I said some things about how much I loved them, how they have helped me, how lucky we are to have each other, and I honestly do not remember because I was trying so hard not to start sobbing.  I told them they didn't have to put it up but I hoped that when they looked at it that it was a reminder of what our family is capable of overcoming.  

I know I say this in a lot of my posts but I just adore my family.  My love for them is huge.  I do not know what I would do without each and every one of them.   My crazy chemo brain didn't even think to take a single picture so I asked my siblings to send me a picture the other day if they still had the ornament out.  Alexa was the only one with it still out and these were the pictures I got from her goof ball kids.

The Real Truth

So my blog about not posting due to the holidays was not totally truthful.  I did step back because I wanted to be with my family more but I was also just emotionally drained and physically felt like poop.  I am finally over the six week mark of the last surgery but between fat grafting and chemo my body was tapped out.  Plus there was too many emotions swirling around in my head that if I had not moved faster in going to the doctor I might not have been here to celebrate this holiday season or  I could be sitting here with a much different outcome.  It is overwhelming to realize how quickly life can change.

Over all I feel super proud of myself for not crying from Thanksgiving through the New Year because I really did feel like that every day.  There were a few days I spent in the shower ugly crying and I am fine with that.  The fact that I am here with Scotty, the kids, and my family is sometimes too much for me to handle.  I ask God too often why cancer has to affect a specific person and not someone else.  It would make so much more sense for this horrific disease to inflict terrible people that need to be off this Earth like rapist, murders, drug dealers.  Why does it have to take good decent people?  I think when I get up to the pearly gates I am going to have the most questions about this than anything else.

We took family pictures and if you look at my face you can see that I am really trying hard not cry.  I get a bit overcome with gratitude to be alive and next to these people.  I am so lucky to have a big a family that truly loves and enjoys each other.  They are marvelous.  If I had infinite funds I would buy a huge plot of land and build a compound so that we could always be together.  In my head this is what heaven would be, me with these people next to me at all times.

This is just my siblings and I.  Thankfully my hair had come back in enough that my scalp was no longer visible.

Here is the original Lowry family before we all got married and filled it up with babies.  I know that everyone thinks their family is the best but I it isn't, mine is.

Of course you need a picture of my sweet little family too.  Man do I love these people.