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.