Hair today, gone tomorrow part I

Ha, you see what I did there? I'm so funny on chemo. Today's post will be how my hair finally decided to say see ya later and begin falling out of my head. Come along on the has tequila!

I mentioned in my previous post that I had read that with my type of chemo, hair loss is usually between days 12-14 after the first infusion. As you all know, I cut my hair 3 weeks ago in anticipation of this event and while it gave me a thrill knowing what I would look like with a pixie cut, my hair is just not suited for that length. It's SUPER curly and hard to control and too short to try to straighten so I ended up giving into the chaos and letting it do whatever it wanted. See exhibit A below...

So to say I was secretly looking forward to hair ground zero would be an understatement. Beginning day 12, I would give a little tug on my hair only to be disappointed when it would still be firmly affixed at the root. I did this probably 10 times throughout the day to no avail and went to bed convinced it would happen on Saturday (day 13).

Saturday came and went, same test of change, same result. Later in the day I went for a mani/pedi with a dear friend of mine and we talked about how ready I was for it to fall out, I was tired of my curly mop, how ironic would it be if it didn't fall out and I just spent a fortune on a wig, etc. etc. Saturday night came around and I started to have some doubts. What if it didn't fall out?

Sunday rolled around and as I got ready for church, yet again, all hair follicles weren't giving up the goods. I went with mom to check out an open house around 12:30, hair was still staying put. Later that afternoon, I was planning on attending a Lularoe party to try on a few items before purchasing and I was a little nervous because I didn't know many people that would be there and while I have no problem sharing my story publicly with all of you, it's a little awkward with total strangers. At a leggings party. The last thing I wanted to be was Debbie Downer.

Then 3:30 came around, I performed my test pull and my hair said, PEACE, we are outta here. I lost a whole sideburn. An hour before I was supposed to leave for the party. Apparently God does still have a sense of humor.

So I came up with a plan that I would refrain from touching my head until AFTER the party. And if it randomly fell out at the party, well then it would be a pretty sweet party trick, "watch me lose my hair using only my MIND".

Luckily, the party was uneventful, I was gifted a VERY awesome care package from my rockstar charge nurses at work, which contained more leggings and shirts and comfy clothes that are AMAZING! Truly, the generosity I have received from all of you is humbling and overwhelming and touching and #allthefeels. But that is for a different post...

Once the party was over, it was time for the real party start. My friend Jen wanted to come over last night anyway, so I totally roped her into shaving my head. As a true friend would, she willingly accepted and brought chips and salsa and ranch to make it a real party, Ole!

While mentally, I was pretty ready for this, a little tequila never hurts so I made a makeshift margarita with frozen limeade and some Cuervo, which ended up being DELICIOUS! When life doesn't hand you margarita mix, you make margaritas anyway.

Kate was still up for all these shenanigans so I really wanted her to be involved to make it less scary. We have been talking about how I was going to lose my hair because of "the medicine I get in my button (port)", to which she responded, "can I press your button and make your hair fall out?!?!?". So cute, but not quite that simple!

I asked her if she wanted to help cut mommy's hair, which was met with an ENTHUSIASTIC "YES!!" so we plopped a chair in our kitchen, I took a swig of my marg and the show began.

Getting ready to start

We made a mohawk first because why not??
"Mommy, you look funny!"

Love these two girls
I took a drink of margarita, she wanted some too, so when I said no, enter total meltdown #threenager
So we put some yellow gatorade in a margarita glass and she was happy.
This I'm sure we resurface at her graduation party as the day she had her first drink.

See ya curly blond hair

Saving the best for last, I wanted to upload a short video but I'm having some technical difficulties getting it to load, so I will have Mitch help me with it tomorrow. Sorry!

I'm pretty happy with the final product. Eventually all these little tiny baby hairs will fall out too and I will be left with one naked, cold head but until then, I'm totally rocking the GI Jane look. I had chemo cycle 2 today, so I will post more about that midweek but it went really well. Starting to feel a little crummy as I write this now but hopefully its nothing a little sleep can't fix tonight.

Thank you for the prayers and support! Specific prayer requests for this week:
Evelyn- that she can get over this cold and be healthy!
Kate- we are trying a new bedtime routine, so that she is asleep before the Tonight Show comes on! Prayers that she falls asleep quickly without too much trouble
Mitch- prayers for his second week of black belt training at Cat, he is doing well with it but its intense and stressful so prayers for peace and an easy week!
Me- Prayers for minimal side effects again this week, hoping it goes as well as cycle 1
And lastly, my mom flies home to Georgia for a few days this Thursday, so prayers for safe travel for her is appreciated!

Have a wonderful week everyone!

Infectious disease

Sorry blogland for my absence the last few days, after my post on Monday, I decided to make things a little more interesting and contract every infectious disease possible. Let me explain...

My first round of chemo was on 8/8. Because chemotherapy targets rapidly dividing cells (like cancer cells), it also effects your white blood cells (responsible for fighting infection). On 8/9, I got a shot called Neulasta which is supposed to help boost my white blood cells during chemo, but I will still see a drop in my white blood cells about 7 days after my infusion.

This would put my white blood cell count at its lowest, leaving me most prone to infection, on this past Sunday.

Which also just happened to be the day I thought it would be a great idea to take the girls to the Children's Museum.

I entered the museum with my family and a smile, and left covered with germs. When my counts were my lowest. In retrospect, this was a poor poor choice.

So I will let you enjoy the photos of happier times...

Because this happened by Tuesday....

This is me, laying on the waiting room couch because I physically cannot sit up. Stupid kid germs.

I woke up Tuesday morning at 4 am unable to keep anything down, even water. By 9 am, we called the onocology office thinking that I must be having some delayed reaction to the chemo. They had us head into the office, at which time I had lab work and a chest xray, followed by a visit by the nurse practioner and some IV steroids and hydration. During my chest xray, I could barely stand for the xray as my blood pressure was in the 80s/50s by that point. 

Once everything came back and I had a physical exam, the nurse practioner diagnosed me with the stomach flu (this was a give-in, my stomach was rejecting everything I tried to put in it), a sinus infection, an ear infection, impending pneumonia (my xray was a little cloudy but not terrible yet) and potentially strep throat or thrush (my rapid strep ended up negative).

I mean honestly, is it even possible to get that many things at once? Apparently, when you are dumb enough to take a cancer patient to a children's museum, it is. I should really be smarter...

The good news is after my IV fluids and meds and a lot of rest, I am feeling a million times better and I have learned my lesson. But to add insult to injury, my dear mother made me go IN to Dairy Queen with her looking like this:

I'm sure this is cosmic payback for something I did to her as a child. Touche mom, touche.

So, in the end, I definitely learned my lesson and will be much more cautious of my weak immune system. Today is day 12 after my infusion, so while my white count is on its way back up, today marks the beginning of when my hair will likely begin to vacate my head. This may seem odd but I am actually looking forward to getting this mop off my head, its crazy curly and dry and I just don't have the talent to style it.

So here's to staying healthy and enjoying the weekend before chemo round 2 on Monday!

R is for...

Today's post is brought to you by the letter R for random, as I'm just going to put down whatever comes to mind. I hope you enjoy, or at the very least, make it to the end of this post.

R is for Restlessness
One unique problem I have had this last week is physically, I am exhausted. Like I don't want to pick up my arm kind of tired. Unfortunately, my brain did not RSVP to this party and much like a certain 3 year old we know, she does NOT want to go to bed. No amount of coaxing, essential oils, white noise or dim lights will persuade her to go down for the night. So I am finding myself in this perpetual awake but exhausted state. Ambien has been helping at bedtime, but I still wake feeling less than rested.

So today, while I should be napping and my muscles are screaming "go to sleep", I am laying on the couch watching Little Rascals and writing this blog post because my brain says "let's party!!". All in favor of relaxing on the couch say "Yoi Yoi Yoi Yoi Yoi!!!"

I mean seriously, this movie is the BEST.
R is for Really good labs
So I had my "toxicity check" with my nurse practitioner at the cancer center today and the good news is, my side effects have been minimal and manageable (KEEP IT UP PRAYER WARRIORS, it's working!!!!). My WBCs were 6.4, Hgb was 12.2 and platelets were above 150,000, which is great news. If my wbcs are less than 1 or platelets are below 100,000 it will delay my treatment, so we are on target to stay on time for cycle 2 next week. Yay, more poison!

R is for Re-entry (I know, its a stretch, just go with it)
During my above mentioned lab draw, the phlebotomist accessed my port again to get my blood and holy stabby mcstabberton, that sucked. R also needs to be for Remind me to use EMLA next time, youch! 

R is for 'Roe
I know many of you have already jumped on the LulaRoe bandwagon but I have been blissfully ignorant until this weekend. I reached out to my coworkers (whom I KNOW are on the bandwagon, they are driving the silly thing!) to learn a bit more about them as I hear they make very comfy clothes and cancer = an excuse to be comfy. Well, within a day of my posting, a new pair of leggings showed up on my doorstep (Rachel, you are wonderful, thank you again!) and wowza, these things have to be made from unicorn hair or fairy wings or something because clearly they are not of this world. 

Needless to say, I predict some new leggings in my future...

Kate feeling my leggings, that's right, the are so soft you just want to touch them!

R is for Rachel
Rachel is the name of my wig. I did not give her this name, the wig makers did, but I do think its rather fitting and it goes along with our theme today so....

I had an appt yesterday to try on my new wig and left a little disappointed only because I look like I am wearing a hair helmet. They washed it and styled it for me and I picked up the final product today. It looks a little better today but will still take some getting used to. The price tag was also about double what I thought I would be spending, so that was pretty disheartening as well (like I previously mentioned, insurance doesn't cover wigs). I have an appointment with the American Cancer Society in two weeks to check out their "free wig bank" so that might give me a second option. But don't tell Rachel, I don't want her feelings to be hurt ;) Also, the picture below is no-makeup, no filter so ignore the bags under my eyes!

Me + Rachel

R is for Relief 
Finances are always a concern whenever a diagnosis of cancer is involved. Initially I was told if I have intermittent FMLA during my treatments, I would have to take my time off unpaid as I would not qualify for short term disability. Well, good news internet friends, we found a loophole and it looks like I will be able to work and get short term disability for my days off during treatments!!! This is such a relief to know that I will still be contributing financially to our family and that we don't have to sell all of our things to afford daycare.

R is for Rations
Lastly, so many of you have asked how you can help our family or have volunteered to bring us a meal. I have created a meal train account that will allow any of you to sign up for a night to bring us a meal, if you are wanting to help. My mom is going back to Georgia next week for a short time, so we are starting the sign up for next week, as it is also my treatment week. Mitch and Kate have a dairy sensitivity so while they can tolerate some cheese, milk, etc. a 5 cheese lasagna might not be the best option for us. I just want to say thank you in advance to all of you that are willing to help us out, whether it be providing a meal, being an ear to listen or a shoulder to cry on. Thank you!

Hop aboard the Meal Train, choo choo!!!


Hello again friends, we are currently on cycle 1 day 6 and today has been a bit better than yesterday. Yesterday was my first day without steroids on board and the lack of energy was definitely noticeable. It also didn't help that it was a gloomy, rainy day all day either. I found myself feeling a little down both physically and mentally but today has been a better day so far. Still staying up on the anti-nausea meds. Between those and all of the prayers we are receiving on a daily basis, I am feeling pretty good considering. I would be lying if I said I was looking forward to my next 3 infusions but for now, we need to take one tiny baby step at a time,

I thought I would take an opportunity in today's post to explain how we got to where we are today, not in the "first mommies and daddies love each other very much" kind of way, but more in the "I have a genetic mutation that gives me cancer" kind of way.

So let's jump in shall we??

For those of you that don't know me well, my dad passed away in 2013 after an 8 month battle with pancreatic cancer. It was fast and fierce and ugly and heart wrenching. We found out he had cancer on the day I was due with Kate (she wouldn't come until 5 days later, already stubborn, even as a fetus) and he was gone before her first birthday. Cancer really sucks.

Kate, Dad and Patti

Fast forward to almost a year later and I was seeing my NP for my annual exam/initial OB appointment (I was early pregnant with Evelyn). Kim was going through my family history and mentioned that I would be a candidate for genetic testing because of the cancer on my dad's side of the family. Knowing I was just beginning another pregnancy (and continued to associate Kate's pregnancy with dad getting sick), I wasn't emotionally ready to do the testing. We agreed there was no rush and I could get it done after the baby was born.

Life with two little ones is pretty hectic so it wasn't until December that I got my butt to the office and blood drawn for the test. I knew the implications of the test going in, I could have a positive result and be at a higher risk for cancer. Or I could have a negative result and still be at a higher risk for cancer because of my family history. What did I have to lose?

We made it through the holidays and most of January had come and gone before my test results were in. Mitch and I met with Kim in the office and she gave us the unfortunate news,  my genes are mutated. Not like in the Ninja Turtle sense (although I am fond of pizza) but in the "you just signed up for an increased risk of 4 different cancers sense". Well Damn.

So, what does having a BRCA2 gene mutation really mean? Let me try to explain.

We all have a unique set of genes that determine who we are and what we look like. These genes come equally from our parents, a 50/50 split. Sometimes genes are broken (mutated) from the beginning (passed on from mom or dad, thanks guys!) or sometimes they break due to environmental factors (sun exposure = mutated genes = skin cancer)

Everyone has a BRCA1 and BRCA2 gene responsible for keeping certain cells in our body dividing at a normal rate. It's like a quality control system, if the cells get out of control, BRCA1/2 shut down the party. The problem becomes when one of those genes are broken, no one calls the cops and cells can grow out of control and become cancer. This gene is not only associated with breast cancer, but also ovarian, pancreatic, prostate and melanoma cancers. My BRCA1 is normal, my BRCA2 is not.

Prior to me discovering I already had cancer, my statistics looked a little something like this:

Average women’s risk of cancer in her lifetime:

Breast: 1 in 8 (12%)

Ovarian: 1 in 70 (1.4%)

Pancreatic: 1 in 100 (1%)

Melanoma: <1 in 100 

My risk of cancer in my lifetime (with a gene mutation):

Breast: 80%

Ovarian: 45%

Pancreatic: 7-25%**

Melanoma: increased risk

**risk varies depending on family history, I haven't been told my specific risk just yet.

As you can see, every woman has a chance of getting breast cancer in her lifetime and the number of women with cancers related to genetic mutations is rather small when looking at the total population. However, because I am one exceptional human being, I decided to get cancer right away and avoid the waiting game (insert sarcasm).

When we were told about my BRCA2 status, the plan was to nurse Evelyn until she was a year old (June 29), get a diagnostic mammogram in July as a baseline, meet with a breast surgeon and plastic surgeon in August and then proceed with a prophylactic mastectomy in September. Even before I knew I had cancer, I was ready to say good bye to the ticking time bombs on my chest. Unfortunately (or maybe fortunately) for me, they got to me first. 

There are a couple things I want to mention very clearly in this post. Kim saved my life by encouraging me to be tested. Not in the superfluous way, but in the very literal sense of the word. If I would not have been tested, I wouldn't have known I was positive. Because I was positive, I qualified to have a mammogram far earlier than a "normal" woman would. Because I had this mammogram, we discovered my cancer very early and proceeded with treatment 3 weeks later. BRCA2 saved my life.

That being said, having this mutation is rather rare, so I don't want to freak you all out into thinking you have it because your grandma's neighbors cousin had cancer in her 30s. Taken straight from, here are indications to consider testing:

Because harmful BRCA1 and BRCA2 gene mutations are relatively rare in the general population, most experts agree that mutation testing of individuals who do not have cancer should be performed only when the person’s individual or family history suggests the possible presence of a harmful mutation in BRCA1 or BRCA2.
In December 2013, the United States Preventive Services Task Force recommended that women who have family members with breast, ovarian, fallopian tube, or peritoneal cancer be evaluated to see if they have a family history that is associated with an increased risk of a harmful mutation in one of these genes (17).
Several screening tools are now available to help health care providers with this evaluation (17). These tools assess family history factors that are associated with an increased likelihood of having a harmful mutation inBRCA1 or BRCA2, including:
  • Breast cancer diagnosed before age 50 years
  • Cancer in both breasts in the same woman
  • Both breast and ovarian cancers in either the same woman or the same family
  • Multiple breast cancers
  • Two or more primary types of BRCA1- or BRCA2-related cancers in a single family member
  • Cases of male breast cancer
  • Ashkenazi Jewish ethnicity
Or in my case, a family history of breast cancer diagnosed before 50, pancreatic cancer and prostate cancer all on one side of the family. Now that I know I am BRCA2 mutated, I can pretty confidently deduce that Dad was as well.

The second complicated piece to this puzzle involve Kate and Evelyn. Because this mutation is passed down from parent to child, our girls have a 50/50 shot of carrying it as well. Right now, there is nothing in the literature recommending young girls to be tested before the age of 18 when they can fully understand and comprehend what a positive result might mean for them. I fully intend on educating both of them about my cancer and my genetics as they grow older, but the decision to be tested will be entirely up to them. There is also an optimistic part of me that thinks treatment/screening options 20 years from now could mean a completely different outcome for them compared to me. One can only hope...

This post is beginning to border a novel so I am going to cut it here, but if any of you dear readers have questions about BRCA or my story in general, I am an open book and more than happy to answer any question you might have! Just put it in the comments below.

Now its time for a nap!

Feelings and fake hair

 Hello friends! It is day 3 after my initial chemo and I'm still riding the Decadron train to energyville (Decadron is a steroid that I take for the first 4 days to help with side effects and produce energy. Alas I had to forfeit my Olympic dreams for doping, but I figure killing cancer is more important than becoming an Olympic athlete)

To catch up, my good friend Jen and I went to a local salon to look at wigs, since we are now on the countdown to total hair loss (it's looking like that will probably be next Friday). Unfortunately, the wigs at the salon were mostly brunette or gray, I couldn't get a great feeling for color so we special ordered two that are more my style. I also learned that real hair wigs are super pricey and harder to maintain (plus it did give me a bit of the willies wearing someone else's hair on my head, I didn't expect that). I also discovered that my insurance company does not cover the cost of a wig so this will be all out of pocket. I have recently connected with another young breast cancer survivor that also has United Healthcare. She wrote this powerful letter on her blog and in the end, United Healthcare covered her for 1 wig as an exception. So it looks like I may need to try to do the same....

Black isn't really my color

Or mullet 

Or Hillary Clinton

These are the two I ordered, the left wig in a more auburn color like the bottom picture and the right wig as shown in the picture. They should hopefully arrive sometime this week for me to try on and make a decision.

Yesterday was my Neulasta shot, which is a tiny shot into the fat of my belly that helps boost white blood cell counts during treatments. It also has severe bone pain as a side effect, so I am taking my zyrtec and zantac to hopefully combat that (not quite sure how/why it works but I'm going with it!) Since I needed a little pep in my step, I put on my "I'm a ray of sunshine" cardigan and walked confidently out the door.
Coffee, water, meds and blogging, my new normal
After going to my appt and running a few errands, mom and I watched "Mother's Day" and enjoyed a little downtime on the couch. Overall for day 2, I felt pretty normal1

This morning is day 3 and I'm still on quite a bit of meds. Since I still have a good amount of energy right now, Mom and I started sorting through the girls clothes to get ready to sell at consignment this fall. We need to get some of this baby stuff out of the house!!

Again, I feel pretty normal for day 3 (likely thanks to my meds) other than I have the worst case of dry mouth and all food/liquid tastes chalky and dry. Totally tolerable side effect compared to the others they warned us about but it is a bit annoying and is impacting my appetite. So I'm going for a pb&j and some chips for lunch, hoping it tastes half way decent!

Not much more to report right now, but I know a lot of you have been wondering how I have been feeling, so far so good! I am a bit terrified of what will happen on Friday when many of my meds stop but we will cross that bridge when we get to it.

Thank you for all the prayers, I truly believe they are working! Love to all of you!!

Cycle 1 Day 1: A chemo oddesy

We have embarked upon our maiden voyage of the USS Chemo, find your bunks and put on your lifejackets, we may be navigating some rough seas...thus begins Cycle 1 Day 1.

We checked into the cancer center around my appt. time at 8 am and then sat for almost 20 minutes before we got called back. No snap chat shenanigans ensued but we did discuss the phenomenon of medical waiting rooms ( I had the first appointment time of the day, what are we waiting for?) 

Muffins, water and saline flushes, yum!
A nice lady named Andrea called us back to B pod where my infusions would occur. She took my weight and height so they could dose my chemo drugs according to my personal specifications (special drugs, just for ME!) and took a set of vitals, during which my normally low blood pressure gave her a bit of a pause (90s/50s, meh.) Mitch and I pulled out our homemade blueberry muffins (thanks Mama Leona!) and water bottles and we were ready to get started.

Then a lukewarm nurse named Mary Ann came over an "accessed my port" which is a bit like docking a boat. From the picture above, you can see exactly what I have under my skin (left picture). Then the nurse popped the infusion set into my POWERPORT (super heroes unite!), similar to the picture on the right. They put a dressing over it and then hung some saline to get it going.

The good news is, thanks to EMLA cream and freezie spray, I didn't feel the infusion set go in at all
Then I received about an hour of premeds, IV AloxiIV Emend, and IV Decadron, all to help with nausea side effects of my chemo. All of these infusions took about an hour to go in, since they have to run individually. In the meantime, Mitch and I played Ticket to Ride and I actually won!!

After my premeds went in, it was time for the big guns, IV Adriamycin, or the "red devil". I have to admit, even the sight of her was a bit intimidating. It was given slow IV push (~30 mins) and has some wicked side effects (hair loss, mouth sores, nausea/vomiting, orange pee (this was a shock!) and less commonly, heart failure). The good news is, I didn't feel anything when it was going in so that's a bonus!

Next up was the IV Cytoxan, which also infused over ~30 mins. I had very mild side effects during this infusion, I can best describe it as a mild sinus headache- tension across my forehead, fullness and burning in my sinuses, all together very tolerable.

So, we played another round of ticket to ride again, and I won, AGAIN!! (friends, this man beats me all.the.time. You can't comprehend how amazing it felt to beat him 2 times in a row!!)

Maybe it was a pity win because #cancer. Whatever the reason, I'll take it!
 We left the treatment center around 11, roughly 3 hours in total, which I think is pretty manageable. I was feeling pretty good still so did a bit of shopping and then grabbed lunch as flattop.

Words can not express how much I LOVE this man

Mitch had to run to Home Depot to get an electrical box of some kind. I took this photo to document the time where Mitch spent under $0.50 at Home Depot because surely this is a once in a lifetime experience and it will never happen again.

Then we came home, I floated in the pool for about an hour, watched a couple of episodes of Sex and the City and then it was time to go get a smoothie and pick the girls up from daycare. All the while, I was still feeling pretty good. Best way to describe it would be like a mild hangover- small headache, a little woozy, a little nauseous. The smoothie hit the spot!

When it came time for dinner, I was getting increasingly tired so I went upstairs to lay down while the family ate. Being the good husband he is, Mitch came up around 7:30 and told me I was getting out of bed and going for a walk, as much as I didn't want to, I did as I was told and it was actually very helpful. Sweet Evelyn was happy the whole time per usual.

And Kate insisted on playing "monsters". I will leave you with the photo evidence below

As a wrap up, chemo day one has been kind to me, I now am on a strict medical regimen that makes me look like a grandma but if it helps me function, I guess its worth it! Hopefully today continues to be a good day.

Before I close the post, I do want to say a heartfelt thank you to EVERYONE that has been so unbelievably supportive to me and our family over the past few weeks. I know we have prayer warriors all over the country and Mitch and I appreciate every single one of you lifting us up in your prayers to our God. This week, we specifically need prayers for minimal side effects for Lindsay, strength for Mitch and a sense of normalcy for our girls, as they can tell something isn't quite right.

Hoping to prevent turning into this crazy character!

For the gifts and the cards and the hugs and the prayers, we say thank you!!