March 30th – They Say You’re Never Given More Than You Can Handle – I Call B.S.!

They say you’re never given more than you can handle – I call B.S.!

Those of you who know me, know that March 30th is my birthday and I am REALLY into celebrating just about anything. Birthdays are days that celebrate you – it’s meant to spend time with those you love the most, laughing and smiling, eating lots of cake and ice cream, and going to bed stuffed and exhausted! This year…I’d like to forget the day even happened…I’d like a re-do.

“How are the children?” is a common question, which I appreciate more than anyone knows. It means people are really thinking about me and everything that is important to me, not just picking up the phone or sending a message asking how I am. Until March 30th, I would have told you they were doing as well as can be expected and we were getting through this really well. They’ve had a lot of changes recently, but we’re doing okay. Ask me the evening of March 30th and the answer is completely different.

Up until this point, I thought they were doing well, as best as I possibly could have hoped for. Yes, we have had our moments. Yes, it’s hard on the days when it takes me a little longer to get out of bed. This day, I thought I was prepared for. This day, I thought I’d have the right words. What I found out, I was not ready for this day….the day when you find out the struggle is real for the little ones and none of this is fair to them…that she’s had to grow up much quicker than is fair to anyone her age.

Olivia had the breakdown I thought would have happened initially – I was not prepared at all. She cried and screamed the whole way home from school…how she hated cancer, how she wanted things to go back to the way they were, how she wished I had hair and wasn’t sick. What did I do you might ask…I sat in the front seat and cried…I couldn’t even find my voice to speak the words I needed and wanted so desperately to say to her. I think I finally mustered up enough of a voice to say “I know, I’m so sorry” and then I had to let my mother take it from there. When we got home I told them I needed to go to the bathroom…I shut the door and sat on the bathroom floor and cried…hard. One of my guy friends texted to see if I was okay and wanted to talk – no, I don’t have time…I have to figure out how to pull myself together and stop crying for my daughter. What I thought may have lasted all night, quickly passed for her, she seemed to be fine, I eventually was able to talk to her and get out more than “I’m sorry”. I hugged her, kissed on her and made sure I was by her side when we went out to dinner, and we had a lovely time at dinner.

When we got home our friends Meri and Lucy were waiting to have cake with us…it lightened the mood and made things easier. The week had been a hard one for us, my grandfather wasn’t doing well…we were beginning to eat cake we got the news, the news we all knew would be coming sooner rather than later…my grandfather had passed away.

Earlier in the day I’d driven to spend some time with him – he was sleeping most of the time now, not opening his eyes, but he knew when someone was sitting with him – he’d raise his hand, which meant he wanted someone to hold his hand. So that’s what I did, I held his hand until he no longer wanted to hold my hand. When I went to leave I said “Grandpa, I’m going to leave now” and he opened his eyes, something he hadn’t done all day. He looked right at me and I knew…I could tell he was saying “goodbye”. I told him I loved him and he did everything possible to get “I love you” out as well…it took so much effort for him to do so. My grandmother then said “can you tell her happy birthday?” and sure enough…he somehow got it out. I told him I’d see him soon and gave him a hug and one last I love you.

He was 88 years old, had a wonderful life and was never really sick, except for the last 18 months while he battled Stage IV lung cancer (not genetic, he was a smoker). In the end for him, was the beginning for me at Siteman and two days after I’d met with Dr. Hagemann for the first time I was having scans, while he was having radiation. He didn’t know what to say, so he just held my hand…kinda became our thing. When we couldn’t find the words to say, we’d hold the other one’s hand. He lived a long and wonderful life, and although we knew the end was coming, it’s still hard to say goodbye.

So, do I think that you’re only given what you can handle, no that’s a total crock! No one should ever have to feel like they’re sucking on a fire hose. I believe you’re given what life throws at you and how you choose to respond is up to you.

The friend that checked on me Thursday when Olivia had her meltdown also called on Saturday morning – did I cry while I talked to him? Yes, because he asked the tough questions…when I said I’m fine the response was “we’re like 5 minutes into this conversation and you’re crying, you’re not fine and no one expects you to be”. You see, less than 24 hours after all the above went down, I got the news that my white blood cells were not good at all either…the blows just kept coming that week. BUT, I eventually started to pick myself up and by Monday morning was doing much better.

Life doesn’t stop just because you have one of the most difficult things you’ve ever had to go through happening. You take the good with the bad, the overwhelming amounts with the light and fun days, and you learn from it. You learn that if you can get through this, the good days will come. And when they do, enjoy them – laugh until your cheeks hurt!

How are we doing 3 weeks out you might ask – pretty darn great, all things considered. There are still a lot of changes taking place, the next three treatments are going to be brutal, but we’re managing the best we can. Olivia and Jaxson are laughing and smiling and are aware I’m about to go down for 7-10 days, but once I feel better I am fully present and we do fun things to create memories. We’re all learning what it means to not have my grandfather here, some days are easier than others – my grandmother can tell you that, but we’re taking it one day at a time.  And when you don’t have the “right” words…grab a hold of the other’s hand, it says more than any words ever could.

 

“What is the Medical Device Below Your Clavicle?” – My Power Port

This is my PowerPort – http://www.bardaccess.com/products/ports/powerport-slim

One of my guy friends texted me yesterday morning checking in and we were talking about Easter. The question above, is what he’d asked me – “Totally random, but what is the medical device below your clavicle?” It hadn’t even occurred to me that people wouldn’t know what it was…I hadn’t even thought about covering it. Well folks, here we go!

Yep, this is what the little booger looks like!

For those of you wondering that haven’t asked, the bump that I have on the right side of my chest, right below my collarbone is my power port. It’s where all of my medicines are given during each chemo treatment. The reason mine is quite prominent is because I’m so thin and don’t have a lot of extra meat on my bones at this point in time. You can even see the cord that runs from the port to a main vein in my neck, which you normally wouldn’t see…I’m hoping that fades as I’m able to gain a bit of weight back.

I had the device put in the Thursday after my follow-up appointment, prior to starting chemo on that Monday. They don’t really sedate you, you’re awake and given some anti-anxiety medication – the area the doctor is working in is clearly numb. I will say that it was not the most pleasant process – being thin is a double edge sword when it comes to the port. It makes it very easy to access, but it’s more difficult to place.

I felt like poo. As you can see, I was a bit swollen. The “suture” was medical glue, which I’ve found out I’m allergic too.

Apparently I’d told myself that this was no big deal – I’d go in, have it placed and be on my way. Not the case. I was in a significant amount of pain, they really had to push and force getting the port in the right place. I couldn’t move my arm very much for quite sometime, couldn’t get in the right position to sleep, couldn’t take a shower facing the water – I was irritated and it hurt.

Finally, a few months into this, I can say that most days I don’t notice it’s even there unless I move to quickly and then it’s the part in my neck that catches and drives me crazy. The power port is a good thing, it allows for easy access to draw blood if/when it becomes more difficult to draw blood for my tests. They can ad the contrast dye for imagining this way.

Every time the PowerPort is accessed, this little guy has to be used. It’s why I have the big white blob on my chest for every treatment.

How long will until I’m able to have it removed? At the two year mark, we’ll discuss taking it out, it depends on how things go with my routine checkups, blood work and scans. Fingers crossed, 18 months after my last treatment, so 2 years total. The jury is currently out as to how I feel about it staying with me that long – my hope is that I’ll get past looking at it as a current reminder after the treatments stop and my hair starts growing back. You may ask why so long – they need to feel comfortable with saying I’m “cured” and until that point comes, the port remains in case I’d need to start treatments again. The longest it will stay in without being replaced is 5 years.

I don’t cover it up much, which became evident by the dress I wore for Easter – I did have a cardigan for church – it’s one of my battle scars, so I let my port hang out most of the time. And I have no idea why I’d assumed most would know what it was or I would have addressed it sooner! Thank you my friend, for pointing this out and asking! I wouldn’t have known it could be a possible question on people’s minds otherwise!

 

 

 

Sometimes You Have to Have a Little Fun with It #2 – My “Signature” Items are BOLD Earrings and my Black Clover Hat!

When I found out I was going to lose my hair one of the first things I thought of, outside of a wig, was what can I do to distract from my bald head? What could my “signature” item(s) be? After a bit of thought I decided on two things – 1. Big, bold, beautiful earrings. 2. A teal baseball cap, I just wasn’t sure what I was going to go with yet.

When it comes to earrings, I usually wear something fairly simple, nothing flashy, just classic, that will go with just about anything. That was about to change. I began looking for anything that dangled (think 2.5”+) and had a bold pattern or color online until I’d decided upon a couple and was ready to go and look at them in person. The Thursday before the head shaving party I headed to J.Crew, they had several pairs I wanted to look at and they were having a sale (I HATE paying full price for anything!!).

I ended up loving three pairs. These were what I was going to start with, and should do the trick. I wanted to see how often I was actually brave enough to go without my wig…at that time I had no idea that I’d be half way through my treatments and only have worn it 1 time (that’s about to change this week, I have 2 things that I’m wearing it to – Olivia’s field trip and a shower for one of my girlfriends on Saturday evening. I got one too many questions from Olivia’s classmates about where my hair was when I was volunteering in the classroom last week and she’s had a more difficult time with everything recently)

It must have become evident in my photos early on that large earrings were becoming my thing, a few of my girlfriends have given me pairs to add to my collection and I love them! I love that they’re supporting me and helping me feel confident when I go out!

And I’m sure by now, if you follow me on social media or see me in person, you know my go-to hat is my teal Black Clover hat (it’s premium color #11 if you’re curious, but color #71 is the reverse and I now have both). I had no idea I what I was looking for in a hat, but my “sister” (if you go back, this means Carrie…although we’re not blood, she’s my sister) said why don’t you just find some hats, you look great in hats. I wanted something different – Black Clover’s slogan is “Live Lucky” and that spoke pretty true to my situation, so I Googled teal Black Clover hat and up popped the hat I now wear all the time. I also bought a camo one that I love, but hadn’t thought about trucker style scratching my head…note if you’re looking for hats because you’ve lost your hair, steer clear of a stiff trucker style, it’s a wee bit scratchy.

Their premium fitted hats are made of the softest material, it’s fantastic! And although Black Clover probably didn’t intend for this hat to be used for Ovarian Cancer, I’m not the only one sporting it – several women I’ve connected with on social media have purchased one and love it just as well. My family (this includes my closest friends) have them and wear them to support me. It’s been an excellent way to spread awareness – because it’s such a sharp looking hat people comment on it all the time and they usually respond with “thanks! My daughter/friend has Ovarian Cancer and this is her go-to hat, so I wear it too”. It’s nice, it makes my heart happy!

Now, I’m not saying you need to rush out and buy this hat, or large, obnoxious earrings – what I’m saying is find something that makes you smile and becomes your “signature” piece that makes you feel good about yourself or is comfy. Hats and earrings might not be your thing, I get it, look for things that make you smile, that make you forget about the fact that your hair is gone and some days you look a bit sick.

I can’t tell you how big my smile probably is when someone says “I like your earrings, they’re great” – it means they looked past the fact that my head is bald and my port is probably showing and saw me, saw something other than the obvious!

 

Round 3 – Let’s Do This!

My family came to support me throughout the day! Mom is always there, she’s in charge of getting EVERYONE blankets. Dad drove in just to make sure I was okay and my brother and Mel brought mom and I lunch!

 

April 3rd was here before I knew it, the thing was, I started the day not knowing if I’d be able to have treatment or not.

The Friday before every treatment I have to go in and have blood drawn to make sure my counts are at the levels they need to be in order to receive treatment – this is anything and everything, but I mainly worry about 2 things, my CA 125 and white blood cell test. I was getting my nails done that afternoon when the number from the doctor’s office popped up…I panicked! “How are you feeling?” was the first question I got. My response “I’m guessing my counts are off and that is why you’re calling”. “Yes, your white blood counts are really low, do you feel okay?” Me: “How low, like low enough that I can’t have treatment on Monday?” “Low enough that if they don’t come up, you will not be receiving chemo on Monday. Do you feel okay?”

Did I feel okay…no, I didn’t. I was exhausted, had been in for a strep test earlier in the week (which came back negative) and was struggling with allergies. I told the nurse all of this. She told me I needed to stay out of public places and avoid people – mask required if I was out in public. I called my mother…I had the children that weekend and I wasn’t sure what we were going to do. No problem, we’ve got this.

I did all of the Saturday morning things, dance and soccer, and then at night they went to stay with my parents and I didn’t get out of the house much at all for the remainder of the weekend.  I wore a mask everywhere I went and washed my hands so much I thought they were going to crack from the dryness. Sunday I went to my parents’ to hangout with everyone and bring the children home – my brother and his family were in town, so that kept the children’s minds occupied.

Sonya sent me a message that said “decorate the masks so they kids don’t feel scared”…so we bedazzled and painted the masks!

It also meant I’d have to miss the Cardinals’ home opener…which wasn’t just any home opener…it was THE OPENING DAY for all of MLB…AGAINST THE CUBS!!! To say I was slightly disappointed was an understatement! But, we had a little fun with it anyway…the rivalry was out!

Peggy took me to my pre-doctor’s appointment and was going to stay with me if I was able to receive my treatment until my mom could get there, she was taking the children to school.  My blood was drawn and re-tested and I headed in to meet with Dr. Hagemann. My first question – how low were my counts? 400…400???!!! Are you kidding me?? Anything under 500 is NOT GOOD AT ALL! And 1500 is where I needed to be in order to receive treatment. She didn’t think the chances were high that I would get them there, but she wasn’t telling me no. The results came in while we were discussing other things, and guess where they were – 2700! 2700…TAKE THAT CHEMO, I’M WINNING!

The thought at not being able to receive the treatment was devastating…even though I dread having the treatment, the thought of not being able to have the treatment was enough to make we want to curl up and cry and worried me!

Guess who gets to have chemo today??? THIS CHICK!!!

The smile that was on my face from having gained 5 lbs and now being able to receive my treatment was HUGE! I was on cloud 9…I think I may have forgotten how scared I was about the stupid chemo – I hate it and worry about having another reaction. But let me tell you, round 3 went off without a hitch! No reaction, was able to drip at the speed they prefer for someone my age and stage, we think we might have found the right way to go about this!

The side effects from round 3 came in roaring like a lion – I could tell on Tuesday at noon that I was heading south, fast. I started the nausea meds, which didn’t last the full 6 hours they’re supposed to. I texted Anne to see if she was able to use both in intervals so they overlapped – she thought she did, but was reaching out to one of her friends. Within 5 minutes I heard back and it was a go, do it. Do whatever you need to do to get through this and if that didn’t work, call to get the other stuff. I basically slept through the next 4-5 days, it was awful…I was so nauseous, so tired, so achy, it was terrible. They’d warned me that #3 wasn’t going to be pretty and the way I felt with #2 was going to trick me…and it sure did!

About 8 days later I was able to really get up and make things happen…walk, run errands, drive a car (woo-hoo!), and other things. I was in the clear with 1.5 weeks to go until my next round – happy dance was taking place and Olivia and Jaxson were so excited to have me up and moving around again!

Today, I’m a week out from round 4…from here on out, it’s going to be yucky, so I’ve been told. I’m not looking forward to it, BUT I’m on the downward slope to being done with chemo, which is a beautiful thing! I’m showing up, showing up and telling chemo “I’ve got this, look out!”

 

 

 

 

 

 

Sometimes You Have to Have a Little Fun with It #1 – Makeover Time, Let’s Make My Eyes Pop!!!

You know the saying “If I don’t laugh, I’ll cry”…or something like that?? I use it often, it’s the truth…I poke fun when I probably shouldn’t. And one thing I knew I wanted to do besides laugh is find ways to cope/have fun with losing my hair. The first thing was the party, next in line a makeover – I wanted my eyes to pop! If people were going to be looking at me a little too long, might as well distract them with some flashy eye makeup – LOL!

The week after shaving my hair off, I texted one of my friends who works in retail and asked her who she’d recommend to do a makeover…she knew I’d just lost my hair. When she asked what day I was thinking, my answer was “tomorrow??”. I have a tendency when I make a decision I want it done like yesterday…a new haircut, a new car, painting my bathroom, etc. If I make up my mind that this is what I want to do, expect me to sign the papers, have a paintbrush in hand, or in this case, an eye pencil and eye shadow in my hand within the next 24-48 hours.

Wednesday afternoon I walked in for my appointment with Tracy – she was FANTASTIC! What I didn’t know at the time is that she actually goes to makeup events for cancer patients around St. Louis and does makeovers for special events.  “What do we want to do today?” was her first question… “I need my eyes to pop and my lips to stand out, anything to distract from this (and I waved my hand around my face/head).”

I didn’t know what to do with the difference in skin color from my face to my head…it’s like tan to as white as your bottom…what in the world do you do with that??!! And while I have eyebrows and eyelashes I wanted to use them, but I didn’t know how. No problem, Tracy spent the next hour going over everything with me. Telling me what to use to hydrate my skin, how to blend my face color into my hairline using a bronzer, and how to get a “flirty flick” with my eyeliner at the end to make it standout just a little bit more, but not too much.

Tracy showed me how to use matte colors in combination with sparkly colors to really draw attention to my eyes. By using a base, I can now use my “go-to” neutral look or add a pop of color if I want, and it all looks awesome.  The “flirty flick” I mentioned above is da bomb diggity, I LOVE IT…it’s a very subtle cat-eye look.

Many people have asked if my eyelashes are fake since I don’t have any hair…answer is “no”. The new mascara I’m using, in combination with Lashboost from R+F(I haven’t used it since my surgery, but message me and I’ll tell you all about it!) have made for some killer lashes. Since having the makeover my lashes are significantly thinner…at treatment 5 or 6 I’ve been told I’ll lose them, not looking forward to that at all!

Yes, it may sound vain but this is one of the things that has made me feel better about this whole thing. I don’t want to look sick. I want people to look at me for something other than my hair loss. I want to feel good when I go out, feel “normal”. This was the one thing I thought could do the trick; and let me tell you, it may be more makeup than I usually wear, but I feel great when I have it all on (more times than not lately, you’re getting mascara, eye pencil, blush and lip gloss, nothing more).

I guess what I’m trying to do through this series is show ways you can lighten the heaviness of the journey. Find something that is your “signature” statement (wait for it, it’s coming!), find something that makes you feel good, find something that gives you a sense of normalcy when this is so far from normal you don’t think it’s even possible. Have FUN on the good days, LAUGH when all you really want to do is cry – trust me, I know it’s easier said than done, but try, just try and you might surprise yourself.

And Tracy, if you see this…thank you! Thank you so much for making me feel like me and confident when I step out the door!

Chemotherapy Round 2 – Was I Crazy to Think I Could Leave for Spring Break the Day After Treatment??

Round 2 was scheduled the day before I’d planned to leave for spring break with Olivia and Jaxson…I’d told Dr. Hagemann from the very beginning there was one thing I wanted to do – take the children on spring break and not have to cancel on them. She agreed that this was feasible, as long as I had backup with me for support. Okay, no problem, we’ve got this!

The treatment itself pretty much went off without a hitch – minus a mild reaction, which caused us to stop things for a bit and then start again very slowly, resulting in a 7.5 hour day. No problem, we’re getting there…third times a charm, right?!? Thankfully I’d packed everything the weekend before and my dad had taken the majority of things with him when he’d headed down ahead of us. Remember, I needed support – my dad coming through like he always does, left the day before us to make sure the house was ready to go and he’d done all of the grocery shopping/errands necessary before we arrived.

5:30am, we were wheels up on our Southwest flight to Ft. Myers, in route to Naples. Yes, you read that correctly…we got everyone up, dressed and to the airport on time, AND we had car service, thanks to my mom!!! She was unable to go with us this time, she needed to spend some time with her dad (he passed on March 30th from Stage IV Lung Cancer). In tow with us on the flight were Kim and Jake…and everything went off without a hitch! We made it in one piece.

Since I didn’t know how I would feel, and had prepared for the worst, I told myself I would make it to the pool every day for the children, even if it was for 20 minutes…and I told Kim to hold me accountable, I could do this! The other thing I wanted to do was list one thing we were thankful for each day and post to Facebook, so we’d have something to look back on (https://www.facebook.com/KickOvarianCancer/).

We had friends and family in and out throughout the week either popping in for a quick visit or joining us for a meal – it was so nice! My dad was able to join us from Thursday until Monday morning and then my brother and his family came in on Tuesday to visit until we left on Friday morning.

 

Since I was unable to get in the pool, my peeps stepped in, in a BIG way…they filled my shoes in doing things that I wasn’t able to. Some evenings I was just too tired and some mornings/afternoons I needed a little bit of extra rest, but they were always there – fixing breakfast, snacks, throwing balls in the pool, feeding the fish by the docks, taking the kids on special dessert outings and so forth.
And guess what?!? I made it to the pool every day with Olivia and Jaxson for the entire time they were down there each time…success! I even made it to the beach on the last day with the help of a few extras – Nancy and Frank. I pushed through, I took the time to rest when I needed it, but made the time to get my bootie out of the house to be with them, because they needed this and I needed to show up for them!

Dad, Kim, Jacob, Kyle and Mel, I can’t thank you enough for all the help in order to make this possible. The others of you who joined us for a visit and or meals, thank you, thank you for putting a smile on my face and making sure we were all okay.

 

 

 

So, was I crazy to think I could leave for spring break the day after round 2…probably so, but sometimes you need a little crazy in order to get through the difficult things, in order to keep showing up, in order to fight. So in my opinion, “crazy” is a good thing!

Ovarian Cancer Takes a Lot of Things Part 3 – Total Hysterectomy

Yes, I have two beautiful children. Yes, I’m divorced and yes, I’m 37 years old (no longer 36!). Were three children ever in my plan? No, the thought had never crossed my mind…until January 19th.

What if I met someone, what if that someone didn’t have children? What if my plan of only having two children changed for that special someone? These are thoughts that began to go through my mind – even though there isn’t someone in the picture now. What if that changed? No problem, I can fix this – I’ll have them harvest what eggs are in my left ovary, I’ll freeze them and if needed will find a surrogate. Only thing is…I would soon find out I couldn’t “fix” this.

One of the many questions I asked Dr. Hagemann during out first meeting was “can we harvest whatever eggs are viable in my left ovary”. She looked at me and said we can try, I’ll reach out to our reproductive team to see what our options are and if they can be in the operating room with us. Perfect! Easy fix, I’ll have a few eggs frozen just in case I need them in the future.

Two days later, I’d get a phone call with good and bad news. The good news was I didn’t have any other masses visible in the CT scan and she felt really good about surgery. The bad news left me with a decision. She told me that the reproductive team (she had another fancy word for them…I cannot for the life of me remember what it was) said stimulating the ovary once removed wasn’t an option, they won’t be able to get any viable eggs. However, if this was something I wanted to pursue I could put surgery off and take the appropriate drugs to make this happen. Here’s the catch – those same drugs could make the cancer spread, rapidly.

Without hesitation my decision was an easy one – we’re not moving the surgery, I’ll be there on Friday morning. You see, if I went the route of taking the drugs for a chance to possibly harvest some eggs that I might never use, it would be a selfish decision. I have two young children. Two children that need their mother in their lives for years to come. Two children that I would move heaven and earth to keep them from any heartbreak. My decisions through this whole process have been with them in mind…what keeps me here is the choice I’m going to make. It was an easy choice I made for them.

Having the total hysterectomy with no chance of having any other biological children has left me with an array of emotions. For someone who had no intentions of having another child, I was devastated. Devastated because something I’d taken for granted was no longer an option. I couldn’t change it, I couldn’t fix it, there was nothing I could do to make this have a different outcome. Heartbroken for the future is what I was left with…even though I am beyond blessed with Olivia and Jaxson I was heartbroken.

I now have hot flashes and am going through changes I shouldn’t have to deal with for quite sometime. Because I was thrown into menopause at such an early age, there are health related risks for me in the future – possible cardiovascular disease, bone health issues, night sweats and hot flashes and the list goes on. Estrogen can be used for some of these issues in regular circumstances. At this time I am not able to use any hormone replacement drugs. Eventually I may be able to do so. The hot flashes and night sweats are THE WORST! It keeps me from sleeping, it requires I go sleeveless or layer when going out so I can get comfortable when a flash hits. It’s annoying as all get out! And really pisses me off!

These are all things I now somehow I have to include in conversations when I’m dating someone in the future, along with having to disclose the “C” word. How in the world do you even begin to bring up Ovarian Cancer when starting a relationship AND now have to add that I’m also unable to have children? For some, that may be a deal breaker. My hope is that anyone I would meet who’s intended to be in OUR life, would love Olivia and Jaxson enough that it’s an afterthought. This is what I have to keep telling myself.

Now ask me why I feel guilty for thinking this way? It’s simple – I’m the lucky one. One of those diagnosed at a young age who was blessed with two children before having to undergo a Full Hysterectomy. I know those that are less fortunate. My heart breaks for them because they are beautiful young women who deserved the opportunity that I was given. And I feel guilty because I’m crestfallen due to the fact that the possibility of having additional biological children isn’t an option – WTF is wrong with me?!? Yet, I still feel this way from time to time and worry about what the future may hold when this is all behind me.

I assume the feelings I have around this subject matter are normal, at least that’s my hope. Having something that I took for granted taken away in a three-day period, is a lot to digest. The emotions that come and go are heavy and hit me out of nowhere. Over time my goal is to make this more a part of me, something that I can see as a “scar” from this whole process. Something that shows I was a warrior and strong enough to fight this battle, not something that is seen as a negative and a deal breaker. I know I will get there and something positive will come from all of this!

 

**Mom, when you’re reading this, please note I did NOT use the “f” word – it’s meremly implied J

Have a Friend or Family Member Starting Chemo – My Chemotherapy Necessities

First of all, let me start by saying that neither myself nor my mother knew the protocol when it came to receiving chemo treatments – we’d never anticipated having someone (multiple people actually) put together bags and baskets of things that might help during or post treatment. It is one of the nicest gestures people can do, saves the patient a trip to the stores to try to grab things while they’re still trying to recover from whatever procedure they may have had prior to being able to have treatment.

That being said, I thought it’d be helpful to share the items I’ve found most helpful to date. Keep in mind, I look like a bag lady when I walk in:

1. A Blanket – I have 2 blankets I take with me each time – one from Jodi, one from Anne. One I use to cover up with, the other I use to line my chair so it’s nice and comfy cozy. It’s chilly in the rooms, and although they have warm blankets, the warmth of the thin blankets only lasts so long. I’ve found putting the warm blanket on and then covering it with one of the blankets I brought with me keeps them warm longer. Plus, you want something that’s yours with you…if gives you a calming feel in a some times frightening environment.

This is my go-to cup as of late, but you must have the straw lid! http://yeti.com/rambler-30

2. Straw Cup – I’ve found that straws make it easier to get the amount of water down that you need to consume. My cup of choice, personal preference, is a teal Yeti – teal is the color for Ovarian Cancer awareness, my dad got it for me. I take the cup with me just about everywhere, including chemo and doctor’s appointments.

Burt’s Bees is my favorite to date. Loving Vanilla Bean

3. Lip Balm and Lotion – good lord my skin and lips are dry! It’s crazy, everything just gets sucked right up when I put it on. I have lip balm I keep in my coat pocket, purse, side tables, you name it, it’s there and handy for when I need them. I’m trying everything when it comes to lotion – I’m in the process of trying to determine what works best, jury is still out, I’ll get back to you.

 

4. Notebooks/Journals – Chemo brain is the real deal. I have holes in my memory about things throughout this process, I don’t remember it as vividly as I’d like. Some of it I probably don’t want to remember too vividly. However,it’s not like when they tell you, you won’t forget how bad child-birth is or you wouldn’t do it again – that is a TOTAL LIE! I remember both all too well, it was horrific – LOL!

Moving on..I use notebooks all day long. To keep track of numbers, appointments, to-do lists, blog ideas. I have several and I use each for a different thing.

5. Magazine Subscriptions/Books – Hadn’t thought about the magazine subscriptions until a co-worker sent them to me — excellent idea, Heather!! Some are your “don’t have to think” entertainment kind, others have more practical articles. The books are piling up, I thought I’d have more time to read, and plan to do so, but I get sidetracked and lose my focus. I thought I’d be able to get more done during chemo, but all concentration is gone about an hour in.

6. Adult Coloring Books/Colored Pencils – These are excellent for the above mentioned lack of concentration. It’s calming and makes the time go faster. Plus, who doesn’t like to color?!?!

7. Pocket-Sized Tissues – my nose is CONSTANTLY running! When my nose hairs fall out (maybe “if”, but I’ve been told it will happen), these will be with me at all times!

8. Night Caps – I had no idea how cold your head can get without having hair! It’s is crazy…although you see me bald out and about, I have a night-cap, baseball cap or stocking cap in my car that I put on upon getting in, or take off right as I get out.

Chocolate Chip Clif Bars are my favorite!

9. Small bottles of Gatorade and Snack Size Foods – I take snacks and something to drink, usually Gatorade, with me to each treatment. Yes, I get about 3 bags of fluids why I’m there, but I try to drink 40 oz of water and at least one small bottle of Gatorade. Snack size foods are an easier portion size to manage as well…it’s not really an environment in which you want to eat a full-fledged meal, but healthy snacks/protein bars work perfectly!

Would love to hear what worked for you as well, leave your list of favorites in the comments for myself and others to see!

The First Day of Chemotherapy – What They Don’t Tell You “Might” Happen

Today, I’m sitting at home, resting…if you’ve seen my Facebook post, my white blood cells are too low at this point for me to receive chemo on Monday, which would be my third treatment. Since I’m not supposed to really leave the house, I’m getting caught up on some posts – I’m wearing a mask if I do leave.

 

The one thing the nurses and Dr. Hagemann told me when I left after my last appointment was that it’s okay to be nervous and scared heading into your first treatment, but show up…just show up and it will be okay, we will help you through this.  It’d never crossed my mind that showing up wasn’t an option, but they say it happens.

Me being the planner I am, had Googled, Pinterested, etc everything about what to expect, what I needed to take with me, side effects of the drugs – you name it, I was looking it up.

My friends Jodi and Anne gave me bags full of everything I might need or had helped them through treatments (Anne is a 3 time cancer survivor, she’s my go-to when I have a question or have something new they’re throwing at me). Blankets, notebooks, lip balm, lotion, adult coloring books, etc – I was prepared and had my LARGE bag packed the night before. A plan was in place, everything child related was handled – Dad would take Jaxson to school, Nancy would stay at home with Olivia since it was President’s Day – but again, not sure I slept too much.  Let’s be honest, I was scared shitless!

Since I didn’t know what to expect, I kinda just went with the flow of things. I started with a bag of pre-medication (Dexamethasone and Benadryl) and once that was completed the Taxol drip began (this would take 4-4.5 hours). What they didn’t tell me MIGHT happen set in at the 15 minute mark, 5 minutes past when it SHOULD have happened if it was going to happen.  I had a SEVERE adverse reaction to the drug…it came out of nowhere, they refer to it as hypersensitivity. I went from telling my mom I didn’t feel well and grab a trash can to, “Mom, my face is on fire, I think my ears are swelling”, to the two nurses running to my chair as I started coughing and my chest tightened up.

Without time for gloves or anything, the two nurses began drawing H-blockers (basically Pepcid and something else) to counteract the reaction – then ran down the hall to get Dr. Hagemann – whatever they gave me, knocked me flat on my butt…I was slumped down in the chair for about the next 45-60 minutes. I’d receive a bag of H-blockers and then we’d slowly try to administer the drug again. How could I not have read somewhere that this was a possibility? Let me guess…happens 5% or less of the time…I didn’t ask, I really didn’t want to hear that I was an anomaly again – ha! I gave everyone a pretty good scare though, including myself.

The first thought that went through my mind AFTER things were under control – what if I can’t take this drug, what in the world are my options then…what if there isn’t another option?? Thankfully, that wasn’t the case. They monitored me very closely, still do, and started the drip again, increasing the speed every 15 minutes. Things went well and I seemed to be okay. I started feeling and looking better, everything was now headed in the right direction.

The remainder of the treatment went well, Mom and Sonya brought me lunch back and I ate a little something, took and nap and before I knew it, my time was up and I was ready to go home, the 6 hours was up. I had anticipated leaving the session feeling a little groggy, but was told I’d probably have a couple good days before the yucky stuff set in…unfortunately, that wasn’t the case since I’d had such a severe reaction. For the next week, I didn’t feel the greatest – nausea and body aches got the best of me, but I survived and the first one was done!

Ovarian Cancer Takes a Lot of Things Part 2 – The Little Things: Energy, Sleep, Working Out

We’re all “tired”, right? Life has us moving in one direction or another, multitasking and wearing multiple “hats” throughout the week. Being a mom of two young children, who don’t sleep too well, I was always tired..what mom isn’t tired (or dad, don’t worry, I’m not leaving you out guys!)?

I can’t even begin to describe to you how exhausted I am. Leading up to my diagnosis I was extremely tired – once I found out I had an actual reason to be tired, I gave in and started taking naps and sleeping without feeling guilty. It doesn’t matter how many hours of sleep I get (it’s not much, I’m up often throughout the night), how many cat naps I take, I’m beat. Some nights rolling over or changing positions takes everything, and some mornings I have to give myself a pep talk to get up and get moving. Today, as I sit here writing, I could cry (and have had a couple tears roll down my face) because I’m just that tired the last couple of days. Doing the most simple of things zaps me for a couple days, and I’ve been pushing myself lately. The most frustrating part is that most of the time, those things are sometimes just hanging out with friends, not running a marathon!

Today, I’m giving in to the tired, my bootie is in “my chair” with blankets on and my feet kicked up.

When was the last time you had a good night’s sleep? I have no flipping clue, I’m up multiple times throughout the night for one reason or another. As of late, it’s because my hot flashes are out of control. My body is trying to adjust from the hysterectomy, then throw in the chemotherapy and it is sweat city at night…one minute I’m freezing, the next I’m throwing covers off and stripping out of my clothing! Some nights it’s because my body aches in the most random places…a dull nagging ache that keeps me up – my right ankle is the location of choice that’s the worst. I miss sleeping through the night. I miss not having something ache or bother me. I miss sleeping on my stomach, I’m a stomach sleeper!! (My port gets in the way)

My stress reliever (okay, maybe I did it for the glasses of wine too) was walking and weights at the gym…and when I say walk, it’s more like a slow jog, but not jogging, 5-8 miles at a time. I FINALLY started walking again a week ago – they’ve encouraged me to walk to help with the joint pain and to keep me out of physical therapy. At first it was 15 minutes on a treadmill at a 3.5 incline (I used to alternate between a 3.5 and 11.5 incline throughout my walk if I was at the gym), today I made it 4 miles around my neighborhood, tunes cranked up! It was the best thing ever!! I’m trying. I’m trying to have a resemblance of what I used to know. I’m trying to not secumb to the exhaustion. I’m trying to get up and move for not only me, but my family. My next goal is adding in legs using just my body weight, not the extra weight or bar I would love to be able to use. It’s all baby steps in the right direction…when I get the go ahead, I’ll be ready to go. There are days I just can’t make it though, no matter how much I’d like to be able to…and that makes me want to scream.

These are all things that will eventually revert back to what I was once able to do. My hope, fingers crossed, is that the exhaustion fades away once treatment is completed – I know this won’t be instantaneous. And the sleepless nights, will once again become a good night’s rest – Olivia and Jaxson, you have 3-4 months to get into a good routine, teasing! But for me, right now, these are all reminders and things that sneak up and tap me on the shoulder as a reminder. Do I dwell on them? No, that’s not going to do anyone any good. Do I want to kick the rock on the pavement when I’m walking a little harder the next time I’m out because of them? Some days yes, yes I do! (A friend told me on Facebook this might help the other day – told her I was going to give it a whirl! You know who you are!)