Super Kid

Tomorrow I will be officially halfway through chemo! 

I am so freaking excited I can barely stand it! 

Seriously, I want today over so I can get in that damn chair and Get. It. Done!!! 

I wish I could say it was all smooth sailing so far but that would be a lie. 

Monday, I woke up with this horrible pinching pain near my port. 

It is really bad. 

I went back to the doctor at Interventional Radiology who did an ultrasound. He couldn't see anything wrong. 

Then I went to the Oncologist who also couldn't find anything wrong. 

She sent me for a CT Scan that also shows nothing wrong. 

I'm in pain for no freaking reason. 

The only thing anyone said that makes sense is there might be scar tissue on a nerve. 

Maybe...all I know is that the pain comes and goes intermitently and is beyond annoying. 

The nausea hasn't been bad. It's been contollable with Zofran twice a day. 

The diarrhea, no so much.

Originally I was taking 1/2 and Imodium a day. Then it was a whole one on certain days now it's daily. 

It usually works but some days are worse than others. 

The Sunday after my third treatment I took my Nexium, Zofran and Imodium while getting ready in the morning then headed to church. 

That afternoon we were planning on attending a birthday party for one of the boys' friends. 

Well, you know that "rumbly" feeling you get in your guy when your stomach isn't right?

Yeah, despite taking Imodium that morning, that feeling was still there. 

I really wanted to go to the party but didn't want to get stuck in this family's bathroom so I took another. 

HUGE MISTAKE!! 

I ended up constipated! 

It's a delicate balance because my system is literally being assaulted weekly and I react differently each time. 

My Oncologist described it like a boxing match. 

When the fight starts the boxers can take a hit and keep going but round after round their recovery time is longer and longer. 

That's what's happening with me. 

The good news is that the constipation only lasted about three days. The bad news is that I ended up stuck in the Walmart bathroom for about 30 minutes. 

Nope, can't make this up! 

The list of side effects is pretty long. 

Tummy issues, fatigue, hair loss, steroid high, steroid acne, blotchy face, and nose bleeds. 

I anticipated most of them but the nose bleeds caught me by surprise. 

They are crazy annoying, happen at the worst times and are competely unpredictable. 

Nose bleeds happen while driving down the road, brushing my teeth, talking to the neighbor, walking down the stairs, walking up the stairs, talking on the phone, lying in bed, etc. 

Pretty much whenever. 

Everyone in the house is used to me walking around with a tissue randomly jammed up a nostril and two friends have suggested using tampons if it gets out of hand. 

It's been an interesting few weeks to say the least. 

The boys attended gymnastics camp this week. Each day they've had a theme. 

Yesterday was superhero day. 

When I asked the boys what they wanted to do Daniel replied, "I want a picture of you." 

Really? 

He knows every DC and Marvel Character. 

Like, really knows them! Give him a name and he can tell you what they are. 

I was expecting one of those...not me. 

I was floored. 

He had me print a picture of myself, without hair, and attach it to his t-shirt with clear packing tape.  

He was so proud! 

He even won 10 Jolly Ranchers for best shirt! 

What an amazing, sweet, compassionate, insightful little man. 

I don't feel much like a superhero, unless pooping is suddenly a super power, but I sure am one proud momma of a really super kid. 

Just Loud

Throughout my diagnosis, surgery and current chemo treatments, people have referred to me as "brave," a label with which I am not comfortable. 

Merriam-Webster defines brave as: "having or showing mental or moral strength to face danger, fear, or difficulty : having or showing courage."

I don't see myself as brave or courageous. 

Great figures in history that I think of when I hear brave are: 

• Harriet Tubman leading slaves to freedom on the underground railroad
• Martin Luther King
• Irena Sendler — a Polish social worker who helped save some 2,500 Jewish children from the Nazis by smuggling them out of the Warsaw Ghetto 
• Combat soldiers
• Firefighters
• Police
• Anyone willing to put their life on the line for the betterment of others

I just talk about what is going on in my life and encourage others to go to the boob squish machine. 

I know, I know...it sucks, it hurts, it's uncomfortable but it's necessary. 

It's not bravery. It's a test. 

Someone recently asked how I was and I gave them the standard answer, "I'm good. Steroids get me through the weekend. The fatigue at the beginning of the week is pretty severe but my staff is amazing. They have everything covered so I can nap when I need too. The meds keep my tummy issues mostly under control."

He responded with, "You poor thing." 

I snapped back with, "Don't talk to me that way." 

And I meant it. 

I am not a "poor thing." 

What I am going through is temporary, manageable and I have a light at the end of the tunnel. 

There are many that will never see the end of treatment. 

They will lose their battle. 

In this regard, I am blessed. 

The cancer was stage one. I will beat this and move on. 

I am not brave, I am just loud. 

If God chose me and my big mouth so that I can spread the word and help to save others, then I am honored to be his messenger. 

Imagine God have enough faith in your faith in Him to make you a messenger.

What! How incredible is that? 

What I am talking about here is perspective. 

I am not a victim. 

I am a weapon, a warrior, a fighter. 

I don't wear battle armor, I have a big mouth, shaved head and pencilled on eyebrows.

Truth be told though? Being bald does make me feel pretty badass.

I'm really liking the bald head. 

It's cooler in the summer, takes no time at all to get ready when we go out and...think of the money I'm saving on hair care products. Ha! 

I am having a great time with pictures of my bald head. 

After my chemo treatment last week, Glenn needed to go to his office and I needed to make a stop at Hobby Lobby for supplies. 

I scored a pair of Yoda sunglasses!!!

Once we were in the car I pulled them out to put them on and Glenn was mortified. 

It was the only time since we met that he wasn't a super aggressive driver. He was so embarrassed that he was hanging back so people wouldn't see us, well, me.  

I don't know what his problem was, my name is on the back of the car! 

Anyway...we got stuck at a notoriously long red light. He was really irritated and grumbling about it. 

While still wearing the Yoda glasses, I put my hand on his arm and said, "Alright you will be."

He tried to not to laugh, but in the end couldn't help himself, and we had a great laugh together. 

I still have 7 more weeks of chemo ahead but I have five behind me. Each week I get closer to getting my life back. 

It's just a path I need to take and I will walk it with God lighting the way. 

With a little humor and a lot of faith, alright I will be. 

Loved, Appreciated, Cherished

Knowing my hair was going to fall out I had been postponing getting it cut but, last week, I couldn't take it any longer and headed to our local Great Clips to have it cut off. 

I knew it! I knew that once I paid to get my hair cut it would fall out. It's like going through the car was and then getting caught in the rain. 

$35 down the drain! 

This past Sunday I stepped out of the shower, toweled off and tried to dry my hair. I say tried because when I rubbed it with the towel it rained down. 

I had to clean out the bathroom sink three times. 

I knew that I was going to have to shave it off but I wanted to go to church so I put a ton of gel into it, got dressed and headed out. 

Think about that for a second...I literally glued my hair to my head before leaving the house. 

By the time I got home my hair was coming out by the handfuls and the gel was decorating my shoulders like I had the worst case of dandruff in the world. 

And of course I was wearing a black dress. Eeeeeew! 

I had told the boys that when it was time they could shave my head. 

Fortunately my BFF and her hubby were coming over for lunch. 

Good thing too.  

The kids buzzed me in the most random directions leaving me looking like something that just escaped from an insane asylum. 

At one point we took a break to let the clippers cool down and I went in the house to see just how bad I looked. I opened the back door and stepped into the kitchen. Glenn took one look at me and said, "Oh good they let you out." 

Bwhahahahaha! Oh how I love that man!

Yeah...it was that bad! 

To refer to the experience as hysterical would be an understatement. 

 

Because I work with food for a living I couldn't risk having tiny buzzed hairs falling out all day long so, off to the shower I went to shave my head. 

To be honest, I've secretly wanted to shave my head ever since seeing Demi Moore in GI Jane in 1997! 

Aaaaah the freedom. 

Let's be honest here, I could have done it any time during my life but now I have the best excuse, right?! 

We made a video of the Great Buzzing. 

Hope it puts a smile on your face. 

Most of this week I have just rocked the bald head, it's summertime, it's hot and my damn scalp still itches. I have some summer weight beanies that a friend sent but I also forget to put them on!

Earlier this week I had to run to Costco for supplies. I was about halfway there when I realized I had forgotten my beanie. Whatever, I wasn't about to turn around and go get it so, I just rocked the bald head. 

I jokingly whispered to the kids that I thought people were staring at me. Daniel replied, "Well, they are." LOL! 

Can we talk about bald ladies? Why is it ok for men to be bald but women need hats, wigs, scarves, turbans etc? 

How many times do you hear a woman say, "I'd cut my hair but my husband loves it long."

Guys, can you please stop pressuring the women in your lives to grow their hair? We know you like it long. 

Fun fact: most of us do too. 

Truly, I can count on one hand the number of guys that prefer short hair over long. 

You don't need to state it...constantly. 

I once had a man tell me he'd leave me if I ever cut my hair. If i'd know how good it was going to be without him, I'd have done it years earlier. Ha!  

While you may see it as "stating an opinion," we receive it as pressure. 

What you are doing is setting us up to feel ugly and threatened with abandonment if we ever lose our hair. 

According to the Mayo Clinic (click the link for the full article) there six primary reasons for female hair loss: 

• Family history (heredity). 
• Hormonal changes and medical conditions. 
• Medications and supplements. 
• Radiation therapy to the head. 
• A very stressful event. 
• Hairstyles and treatments. 

There are 6.8 million women in the country currently dealing with hair loss from Alopecia alone. 

Although I don't care about my hair loss, the thought for some women is catastrophic. We are judged by our hair. Our looks are rated on good or bad "hair days." For most, our femininity and confidence is tied to our hair. 

Imagine the emotional damage that can be caused caused by having to shave it off when the chemo or hormone blockers kick in.  

You can't tell your partner that you love her "no matter what" and that she's "beautiful no matter what" when you've been telling her for years that you loved her hair. 

I'm sorry but...

I love you but...

That's really good but...

In statements like this, everything after but is bullshit! 

The worst I've heard, from another cancer patient, was when her husband told her that he, "loved her but missed her hair." 

What he was telling her was that he loved her, but he didn't and that's bullshit! 

 

Two Down, Ten To Go!

I've had two chemo treatments so far. 

Honestly, the chemo treatments themselves aren't bad. In fact, it's pretty relaxing!

Having the port installed was not relaxing despite the drugs they gave me. 

They put me under conscious sedation which means that I was still sort of awake but didn't care. 

The problem is that lidocaine and novacaine wear off super fast in my body. The doctor had to give me extra lidocaine half way through the procedure. 

I did warn him that this was going to be necessary but I don't think he took me as seriously as he should have. 

After the port was installed I was sent back to the pre-op/recovery area where my wonderful friend Julie waited for me. 

Julie is an amazing person who is a retired oncology nurse. She answers all my questions and keeps my anxiety riddle brain at ease. 

Julie and I met a couple of years ago when she was assigned to my Mother's of Preschoolers (Mops) group as our Mentor Mom.  

Mops is an amazing Christian based program that brings moms together to help one another through, what is undoubtedly, one of the hardest times of life. Although the boys are going into third grade now, I have been a member of Mops since before they were one year old.  

Mops has been my lifeline for years! 

I thought I was going to go insane from the isolation, when Covid ravaged the coutry and forced us all into quarantine. To help keep what little sanity I have, Julie started coming to my house once a week with a bag chair, a cup of coffee and a blanket so that I could have company. 

We would sit out in the sunshine on the lawn and just talk.

We have continued to meet weekly and Julie was one of the first people I called when I was diagnosed. 

Surgery, chemo, port installations, etc. are really scary when you have no idea what is going on. 

Julie is the calm in my storm these days. 

I can message her with the dumbest stuff and she never criticizes me. She just answers my questions and makes me feel normal. Not an easy task, I can assure you!

Because Glenn was going to be taking me to chemo that week, I asked if Julie could bring me to get the port put in. I'm so grateful that she was there. She understands things that neither my hubby nor I do. 

The port hurt like hell! 

It was so bad that night, I almost vomited while trying to eat dinner. 

So, of course, I called Julie! 

It really wasn't the actual port that hurt. What was bothering me was the area on my neck where they accessed my artery and then pressure dressed it with a folded up gauze pad and tegaderm (clear plastic medical tape). The gause pad was putting so much pressure on my neck that I could feel it when I swallowed and it hurt to move. 

They closed the area with surgical glue so I didn't even need the pressure dressing. We decided that removing that part would be ok. 

I washed my hands, got out the Neosporin band-aids and got to work. 

After the gauze had been removed and replaced with the bandaid most of the pain in my neck went away. 

The purple thing and the catheter are under my skin. In the picture above, the stuff on the top is the needle and catheter through which the drugs flow. 

The port is on my chest, the catheter goes into my carotid artery. 

The port is fantastic! They can draw blood through it and also give the drugs through it. No more poking my arm everytime they need blood. 

The reason everything is taped up in that picture is that after they finished installing the port they left the needle in (accessed) so that I didn't have to endure a needle stick the next day when I started the chemo. 

While I am very grateful to have it, the first few days of having the port in were terrible. According to the doctor I had "higher than normal bruising/swelling" which was most likely contributing to the discomfort. 

Evidently I'm special! 

The neck is a pretty tight place and a little swelling goes a long way. 

Exaserbating things was the fact that the Tegaderm ate my skin...literally. My skin came off when they removed the tape and the tape has to be removed to remove the needle. 

By the following Friday (Chemo day 2) almost all of the swelling was down, most of the bruising was gone and Julie reminded me to use my Emla cream prior to going in for my infusion.   

Emla is a prescription lidocaine cream. It is heaven in a tube! 

I squirt a blob onto my skin on the top of the port then apply plastic wrap. The plastic keeps the cream from getting absorbed into a bandage or gause pad and numbs the area. It worked like a charm! I didn't even feel the needle when she put it into the port! 

As I mentioned earlier, chemo is a pretty chill event. The nurses are super nice! Each patient has their own TV, Wifi is free and there is a volunteer who gets us beverages and snacks.  The pumps unplug and have a four hour battery runtime which allows us to walk around if we want to and we are free to go to the bathroom whenever we need. 

Most people (myself included) picture chemo with lots of vomiting and horror stories. While vomiting does happen for some patients, it doesn't happen there. It usually takes a couple days for the drugs to work their way into the system. 

People don't vomit the moment the drugs start flowing. 

Most of us sleep or watch TV. Some people can even work and bring laptops. 

I sleep :) 

The order of my infusion is: Steroids, Benedryl, Taxol, Herceptin. 

The steroids give me great energy for the next couple of days but it doesn't kick in right away. The Benadryl is precautionary to keep me from having a reaction to the Taxol. Taxol is the chemo drug and the Herceptin is the Her2 blocker. From when I arrive to when I leave it's approximately four hours. 

Usually I fall asleep once the Taxol is started and sleep until the Herceptin is almost finished. 

Glenn drives me to chemo then goes to Wawa and picks up lunch. 

We eat lunch together then I pass out. 

Last week he ran errands while I was sleeping. 

By 3-4pm on Friday I am feeling pretty good and by evening the steroids have me FLYING!!! 

I can clean the house, fold the laundry, finish cakes, bring home the bacon and fry it up in a pan! LOL! 

Unfortunately, sleeping on Friday nights is also an issue. 

That issue is usually gone by 2pm on Sunday. 

Once the steroids wear off, I crash. 

Mondays are tough because my energy is low and the chemo fatigue sets in. 

 I have dubbed Tuesdays "Taxol Tuesday" as that's when the tummy issues start. 

Taxol Tuesday's Breakfast of Champions is coffee, toast, Immodium and Zofran. 

The Taxol creates issues bad enough that I need to take 1/2 and immodium every day but I increase that to a full one on Monday and Tuesday. 

I am blessed that the Zofran is doing it's job and I have not thrown up...yet. 

Each week is different so we'll see. 

The other charming side effect is acid reflux. 

OMGness it's horrible! 

Nexium makes 20 mg mini-capsules. I take one in the morning and one in the evening to combat the heartburn. (Just FYI - if you are undergoing chemo don't add anything unless you check with a pharmacist to make sure you won't have a bad reaction with the chemo drugs). 

I still have my hair. They keep telling me that it's going to fall out. I was going to get it cut then thought, "Why waste the money?" So, it's an unruly mop! 

As I've mentioned previously, I have a love/hate relationship with my hair. Mostly hate. It's been the one constant that has driven me crazy for most of my life. 

I'm ready to not have to deal with it for a while.  

I decided to go to church on Sunday since the mask mandates have been fully lifted. While getting ready I took and shower and had to shave my legs. 

I was so annoyed! 

All I could think of was, "Can we hurry up the hairloss thing?"