Honestly, I don’t know that I have ever given huge thought to the fact that October is BCA month, except for when my company had certain products to market for the cause.  It was never personal to me–until it got VERY personal this year.

It’s really kind of weird.  I keep seeing words used in campaigns about my disease that I just don’t resonate with:

FIGHTER: I’m not fighting anything.  I didn’t train for this.  I am not actively fighting against anything.  I am not exerting myself physically at all.  In fact, I am just laying around alot and resting every chance I get.  

WARRIOR: See Above

SURVIVOR: Not Yet

SAVE THE TATAS: Screw that!  You can have my boobs if it means I am healthy and don’t have to put up with the crap I’ve been going through.

NO ONE FIGHTS ALONE: Okay, I get the sentiment and I love that I have so many people supporting me.  But I am the one being poisoned each time I go to the clinic.  I am the one suffering.  I am the one in pain.

I have heard many other things personally that I cringe when I hear.

“You are so strong”—Well, what choice do I have?

“You look gorgeous bald!”—Thanks for the kind words, but I miss my hair and I am on the verge of tears every time I have to get ready for an event because I don’t feel like myself.

“You make this look easy.”—There is not one single thing about this that is easy!

“God never gives us more than we can handle.”—Wrong on so many levels.  Number One: God didn’t give me Cancer.  Number Two: I am learning more and more to lean on God because I CAN’T handle this anymore.

I know my friends and family mean well.  I know they love me and care about me.  I am so very grateful for my community.  But my life is really hard right now and sometimes I just get bitter.  I understand that many people don’t know how hard it is right now because you only see what I post on socials.  You see things like this:

But when you see those photos, you don’t see what it took to prepare for that fun event.

When I know I have an event or an outing, I know I have to rest most of the day leading up to it.  My energy levels are at an all time low, so I have to save every little bit for when I want to enjoy the event.  Then there is the fact of getting ready/attire/makeup/hair.  I have lost about 30 pounds at this point so most of  my clothes are baggy.  That means I have to dig through my closet just to find something I am comfortable in or go shopping for something new–an exhausting feat in itself.  

I have always loved doing fun makeup and hair-if you knew me before my diagnosis, you know this for sure!  But those two worlds-makeup and hair- are completely different for me now.  My skin texture is different as is my coloring.  I have never battled with dark circles under my eyes or sunk in cheeks.  I have very little eyelashes, and what is there, is super short and sparse so I can’t wear mascara and I have yet to find a fake lash that works for me. 

As for hair, these are my choices:

1. I wear a wig.  I have a small selection, but none of them are “me”.  They are hot, itchy, uncomfortable, and I am always worried about them slipping around or quite literally just falling off.  Then I wonder if people are looking at me trying to figure out why that lady has on a bad wig-but I refuse to pay the literal HUNDREDS of dollars for a decent wig when I will only wear it a handful of times.
2. I go physically comfortable (bald) but then I have to deal with the looks of sorrow or pity.  I have to answer people’s invasive and insensitive questions.  Then also is the waves of extreme hot or cold because my head is out there naked to the elements.

Both options have some level of uncomfort.

Friends–be thankful for your hair!  Curly or Straight, Thick or Thin, Whatever color under the sun…just be thankful.

Here is basically what I am saying friends…this is getting more and more difficult.  I will continue to work hard to be positive and keep a smile on my face, but IT’S HARD!

While I love my new clinic, I still very much hate clinic days.  It is no fun at all to be hooked into an IV pump that is filling my body full of poison that will make me feel like poo for weeks and honestly, even months.

I had just started growing my hair back because I had taken a break between treatments.  It was so fun!  I had this super duper soft gorgeous gray fuzz on my head…until that started falling out.  Again-BALD.

I have neuropathy in both my hands and my feet, but the feet are the worst.  Shoes are painful, but here we are approaching Fall and Winter where the temperatures will be dropping.  Luckily I was able to find some fur lined Birkenstocks and some cute Ugg open toed shoes.  But if you see me wearing slippers in the next few months-mind ya own business!

The pills that I have to swallow on a daily basis are insane.  I used to pride myself on the fact that I was not on any prescriptions.  HA!  On top of all the pills are the potions I have to drink too.  Beyond that is the fact that even with all this, I still struggle with some intense side effects.  I have 5 nausea meds but still battle nausea after treatment.  I take two natural stool softeners alongside 2 constipation meds and still sit on the toilet with tears in my eyes because I just want to poop!  (TMI-I know).  Then the pain of the hemorrhoids make it even worse.  It is a shitty situation (or I wish it was).

I used to be BUSY all the time.  I was jumping from one activity or errand to the next.  Now, I plan my activities based on my nap times.  And some things, I simply cannot do even if I wanted to.

My skin is awful!  I am constantly having reactions to the bandages that they have to use during treatment.  But even beyond that, my skin is turning into scales.  I have random rashes from who knows what, and my skin is drier than a lizard.  I am slathering myself in coconut oil and castor oil, hoping for the best.

Well…now that I have put a damper on your entire day, let me assure you that I am fully aware that this is just a season.  I am going to kick this disease to the curb, and be back to normal “in no time.”  I know my God is so Good, but right now, this doesn’t feel good at all.  I continue to blast Praise and Worship music and fill my mind with scriptures and reminders of His goodness.  I am thankful for an amazing community of people who pray for me and lift me up.  Thank you for loving me and supporting me through the good, the bad, and the ugly.

Many people have been reaching out asking what we need.  Our needs are completely covered, but there are some things that are helpful and bring me joy.

Things that are helpful:

Gift Cards for DoorDash, Instacart, and Sprouts

Things that bring me joy:

Sunflowers

Silly Animal Videos (Send them all to me!  Instagram @jamisullins)

Tias Brownies–If you haven’t tried them, you MUST!

H Tea O–Any Unsweet Tea Flavors but Watermelon, Coconut, and Peach are the best!

When I have the energy, we love to eat out.  We are pretty limited and only eat at local eateries that we know bring in good, fresh ingredients, and have vegetarian options.  These places are on our rotation:

Waters Edge Winery on the Rose

In the Raw

HideAway Pizza

TXMZ

Sisserous