Round #4 After Effects – You Can Leave Now, Don’t Let the Door Hit Ya!

I started writing this post on Friday, thinking I had enough energy and these horrible side effects were gone…umm, not the case. It’s now Saturday night and I’m going to take a whole new approach in going through the days since treatment. I knew rounds 4, 5 and 6 were going to be the worst, each one possibly being more difficult than the other until the end. No problem, I got this…only when you’re in the midst of it, that’s the last thing you think. Today (Saturday), I had some tears because I’m so over it – tired of the nausea, tired of this horrible taste in my mouth that comes from I don’t know where, tired of being able to feel every teeny, tiny joint in my body aching.   I’m sharing this only to document what the days after treatment feel like for ME…nothing more, I do not want anyone to feel sorry for me, that’s not the reason behind this post. (Keep in mind, everyone reacts differently)

Tuesday – Day 1 After – I usually start to go downhill around noon time the day after, I’ve never been one to get the burst of energy from the steroids, I pretty much gradually start to feel yucky. And sure enough, that would be the case this time around.

I run the last of my errands in the morning on these days and then take a nap. By 10pm on Tuesday my body ached…back and neck were the worst, I knew this wasn’t going to be good, this normally didn’t happen until a few days later. No problem, I’ll keep the nausea medication going (I take 2 different pills that are supposed to last 6 hours, when they don’t, I alternate medication every 3 hours) and add in the Tylenol (I haven’t taken pain killers since surgery, I’ve been fortunate to manage the aches with Tylenol…or, let’s be honest, I try to ignore them).

Not one of my greatest days.

Wednesday – Day 2 After – 10:35am “Mom, I need you to get my wallet, I need to call the hospital” – I could barely get that sentence out, I was not well. Got the number, called my nurses and Amy answered “Amy, it’s Randalynn…” before I could say anything more “Hun, something’s not okay, are you alright?” Me: “No, I think I need some fluids and something else, I don’t feel right.” “Come in now, we’ll have your chair ready for you.”

Now, here’s the challenge…how was I going to get from the bed to the car…I didn’t know if I’d make it, but I did – one foot in front of the other. I knew if I made it to the car I’d be able to go by wheelchair the remainder of the way. I forewarned them on the phone, I may get sick, so if you can have something by my chair, that’d be great.

A woman I’d met a couple of weeks back was so confused to see me, she knew my treatments were on Mondays…I told her I wasn’t feeling well and needed fluids, steroids and more anti-nausea meds. Amy and Elizabeth moved quickly and had me hooked up and the meds. The hardest part, not throwing up during the accessing part. The alcohol and flushing they have to use to access my port comes up through my throat and out my mouth, it’s disgusting on a good day, I really can’t describe it.

I think I slept the full two hours I was there, got back in my wheelchair to head back to the car, to head home to sleep. I was able to force myself to eat a little and drink some, I did NOT want to go back on Thursday for more meds. Accessing my port alone is enough to make me throw up and I did not want to do this two days in a row.

Made it to the family room and my coloring was much better!

Thursday – Day 3 After – Laying in bed I thought I was managing just fine…then I started to move and I changed my mind. I felt better than Wednesday, but the nausea was overwhelming. I called my nurses and told them I was okay and didn’t need to come in, that I’d call the hospital and go to the after hours facility at Siteman, worst case.  After Wednesday, they made sure I knew where I needed go if I needed anything. I continued to eat and drink what I could and we managed.

The body aches were in full effect and the one thing I haven’t mentioned yet are the hot flashes – remember, I’m in menopause at age 37, on steroids, taking chemotherapy. I fell asleep in my chair in the family room and woke to sweat streaming down my face and the back of my head. I HATE EVERYTHING THAT HAS TO DO WITH HOT FLASHES!!! The medication we’re trying doesn’t really seem to work, but I’m patiently trying to give them a chance.

In the past Estrogen hasn’t been recommended for women with Ovarian Cancer, but new research has been done to see what happened when women were given a low dose of Estrogen (I’m taking .5mg). What they’ve found is the women who took Estrogen actually lived longer. Why you might ask, because of the medical “complications” associated with entering menopause at an early age and the health conditions associated with this happening.  Without the hormone replacement we are at risk for an assortment of things, including bone, heart and cardiovascular complications. So, I’m giving it a whirl…jury is still out.

Olivia’s First Grade teacher does such a great job with fun things like this, the kids love sharing their work!

Friday – Day 4 After – I HAVE TO GET TO OLIVIA’S SCHOOL TODAY! Olivia had her end of year “Writing Celebration” and I needed to be there for her, so what do my parents and Sonya do, they show up…they show up to make sure I’m there for the kids on the days they need me most.

The shower alone wiped me out, then trying to manage the nausea, and the one thing I wanted to make sure was that she couldn’t tell how awful I really felt (I didn’t think I looked too bad, all in all). Sure enough, I made it – the smile on her face was enough to get me through and she was so excited to share three of her stories with us that she’d written. I made it, that was all that mattered, I made it! Needless to say, I napped for the remainder of the day until they got home from school.

This is his “happy dance” when he makes it to the end I’m on when they race to warm up their legs.

Saturday – Day 5 After – In the past, I’m up and moving on Saturday…like without any trouble. Might have some aches and pains, but it’s tolerable. Not the case this time around…I thought I was going to throw up everywhere (side note, I have not thrown up yet, thank the lord!).

Jaxson had soccer and he loves for me to sit at the one end and watch so he can race to me each time – I wasn’t about to miss this. Get your body to the soccer dome and sit your butt in the chair, you can do this. And…I did. I felt awful and there was no hiding it, no one really asked how I was feeling it was more “oh gosh, you don’t look like you’re feeling too well today..I’m so sorry”.

I got Olivia dressed for dance and then she was off to her friend’s house for rock climbing and a sleepover – something she was so excited about!! And I did it, I was able to get both of them where they needed to be, on time and in attendance. I was exhausted and felt awful, but we managed. I’m hopeful I’ll be turning the corner on Sunday (today)…stay tuned!

Here’s the thing about this stupid thing called chemotherapy, everyone is effected differently, everyone’s “cocktail” is a little different than the others, each cancer and stage requires something specific. So what may bother ME, may not another. How long MY side effects last, may be shorter than the next person. You cannot compare, and who in the world would want to?!? Am I a “hero” because I made it to where I needed to be this week? Absolutely not, I’m lucky…I got lucky.

So what is the worst part of this past week you might ask? I could say it’s the nausea, I could say it’s the aches, I could say it is the unimaginable exhaustion and not feeling like I’m fully present with Olivia and Jaxson when I’m sitting with them in the same room…but the truth is, it’s that I know I have to do this two more times and I’m scared shitless (sorry mom, no other way about it) about how much worse it’s going to get.

A friend of mine, Jo, commented on my Facebook post and said this disease is not for the meek and anything we can do to spit in the ugly eye of this disease is good for our soul! So take that, this crappy, awful, never want to see you again week – you may have knocked me down repeatedly, and made me cry, but you didn’t win and I’ll see you two more times…get ready for the “spit”, it’s coming!

And this is me today, honestly feel I’m turning the corner and it’s not a false alarm — ready to cheer (it’s more like yelling) for the Blues from my chair!!  I know I have some visitors from Nashville who regularly read my blog, sorry y’all, I bleed BLUE!!!  Let’s Go Blues!

Genetic Testing – Yes, This is Part of the Process too…at Least for Me and Most Women my Age with Ovarian Cancer

From the time of my appointment following surgery, when I found out I had two separate forms of cancer at the same time, they’d wanted genetic test done sooner rather than later. At 36 years of age, to have both Ovarian and Endometrial Cancer is not the norm, so they were concerned about my genetic makeup…and now, I was too.

On March 9th I headed to Siteman for the first time since having my scans and everything in February – Dr. Hagemann has office hours on Monday at Missouri Baptist and that is where I see her unless special testing is done, or I get sick (this hasn’t happened as of yet). My appointment was with Sheri and I was a little nervous…why, I’m not sure. I mean, this was my easiest appointment to date and I was still nervous. Mom and I walked into her little office on the 13th floor and sat down. Sheri started to walk us through the process and then stopped.

“How many treatments have you had?” I think she was trying to determine if my hair was growing back or if I’d just lost it. Me: “I have my second treatment on Monday, they wanted to get this done prior to having my next treatment.”

“Are you sure this is something you’re ready for, you’re early in this process and have been through a lot in a short amount of time.” Me: “Yes, I have, but I’d rather have things thrown at me all at one time. That way I don’t have time to really think about it.”

“The testing we’re going to perform may reveal things that you’re not ready for, and we may have some unknown results because research isn’t keeping pace with the number of genes we’re uncovering. Are you sure you want to go ahead and proceed?” Me: “Yes, I’m one that needs to know the answers. I need to know what’s ahead of me.”

You may ask what it was we were trying to determine and why I needed to know the answers as to what lies ahead of me. The main reason for the genetic testing was to see what we were up against, if anything, in terms of the BRCA genes. The team of doctors were worried the genes had mutated and I would also need to add Breast Cancer to the list of things on my already full plate – they’d even walked me through what my options would be if the tests did come back and one of them was mutated. Was my head spinning, yes it was, but I was doing a good job of hiding it.

After reviewing all of my family history, which does have cancer on both sides, she asked how many genes I wanted to be tested for. We could do a regular test, which would cover the BRCA 1 and 2 and several others that they knew the way they would effect me, or I could do a 42 or 72 gene test – both of the later would leave me with results they may not have the answers for, for the time being. I was reassured that I would sooner rather than later know how the unknowns come into play, but I needed to be okay living with the unknown for the time being. Was this something I was prepared for, yes. I told her I’d rather know what was going on instead of having to go back and be retested at some point in time.

How do they take a sample? Simple, blood test. What’s not simple is when can they draw this based on treatment and if you’ve had any transfusions. You have to be a week out from chemo, your DNA is stored in white blood cells and in the first week after treatment these are being destroyed, after that point they’re rebuilding. You can’t have had a blood transfusions recently – you wouldn’t be testing your white blood cells, you’d be testing someone else’s. And, if you’ve have a bone marrow transplant you can’t test the blood – because you’d be testing the other person’s DNA, not yours – a skin tag may be performed instead.

The nurse came in, drew the blood needed and we were off. I’ll give you a call in 2-4 weeks and I always start my calls with “is this a good time to talk”, do not let that scare you, it means nothing.

Fast forward 2 weeks to the date and I’m on the beach with the children and I missed a call from her. My heart was pounding…I wanted the results, but at the same time I was scared to death. I really wasn’t looking forward to having to have another surgery and I wanted for things to be as normal as possible.

I called her back, left a message and heard back from her about 2 hours later, and she started the call just like she said she would “is this a good time to talk?”. Yes, I was ready…ready for some good news?!?! I sure the heck was — guess what?? I have no genetic mutations and I do not carry the gene for Ovarian Cancer. I was smiling from ear to ear, I didn’t pass anything along to my children – my children were not going to be genetically effected by this. This was the best news ever – but wait…how’d I end up with not one, but two cancers at the same time?

At this time, they don’t know why I have Ovarian Cancer and had Endometrial (remember, it was a focused area, and my uterus was removed). I’m a head scratcher for them. I’ve been outside of the box on this entire thing, why not with genetic testing as well. It was good news. It was great news. It was what I needed after two months of non-stop hospital visits, surgeries, appointments and treatment. I needed this in a big way, it gave me the push I needed to keep going – I can do this, I don’t have to worry about the possibility of another cancer, at this point in time…and fingers crossed, no more operations!!  Woo-Hoo!!!

If you have cancer and are given the option to have genetic testing done, do it. Do it not only for yourself, but for your family members.  Early detection is key with any and all of this, no matter what form of cancer it may be.  There are preventative measures that can be taken to ensure one lives a long and happy life!

*** yesterday I ended up at the hospital for fluids, more steroids and anti-nausea medicine, Round #4 is kicking my butt, but I wanted to add this small part…while there they introduced me to a woman as close to my age as they could find, she was diagnosed at age 40 and just got the all clear to have her port removed – 2 years since her first treatment.  She asked if I had been tested for Lynch Disease.  Yes, I have, twice to make sure I didn’t get a false negative.  The reason she asked was because she has Lynch Syndrome and it’s something us young ones have to worry about as well – click on Lynch Syndrome above for more information.

**** One more thing I forgot to add to this one before posting. On March 22nd UC San Diego released new findings with regards to the CRISPR method and how it can be used by killing the “bad” cells by not effecting the healthy cells – comes into play with those who have Ovarian Cancer and BRCA 1 or 2.  Dr. Shen went to high school with one of my friends in St. Louis.  I cannot even begin to explain the study, but take a listen, link is connected to his name above.  I’ve asked Dr. Hagemann about it, but since my tests came back okay, there wasn’t really anything to look into at this time.

 

Sometimes You Have to Have a Little Fun with It #3 – Fingers and Toes!!

Yes, I’m pretty much a girlie girl who likes to have her nails and toes done, while still enjoying the outdoors, sports and getting a little dirty!  I have always loved having fun with colors and sparkles on my fingers and toes – figure if I kept them short I could do just about what I wanted, while showing a bit of my personality.

LOVED this one too…went really well with my teal toes. Neutral!

Upon being diagnosed I started with my teal toes, I wasn’t quite sure I was ready to take the teal to the fingers yet, so I went with a sparkle that had teal in it.  I still had my hair at this point, so I wasn’t quite ready to be all out about it.  Remember, until I lost my hair I’d only shared with my close friends and family.

My favorite combo at the moment! The poor girl that does my nails always asks “you’re sure?!?”. “Yes, I AM!”

Apparently when I lost my hair, found out it didn’t look too bad at all, I was ready to go, just needed to find the right color for the fingers.  In between then and what I have now, I’d change the nail colors from sparkles to a grey, one finger sparkle and now…my teal with one teal sparkle finger.  Again, Olivia says “This is great mommy, everyone can see your nails and know what’s wrong with you.”  By the way, my sister-in-law gave her a teal water bottle in her Easter basket this year and it’s like the best thing that’s ever happened to her…she tries to take it with her to school every day.

Having my nails done gives me a time to relax, a time to be pampered, a time to feel a bit like myself.  It is wonderful.  I’d say I’d love to get a massage as well, but I’m still not sure how in the world that will work with where my port is placed…so I’m holding off for now.

Thank you, Jess!!

One of the best texts I received was from one of my friend’s phones, it was his wife…showing me her teal toes she’d just had done for an event for ME…she picked her nail color for ME!  Jess, you made my eyes fill with tears!  If you are looking for a way to support anyone with any form of cancer, figure out the color and paint your toes and show them…it’ll put a smile on their face, trust me!

Figured we’d need a little pick me up post to get through this week…short and sweet, I know, but it was all I had in my for this one.  Find things that make you smile…make a list and rotate through them when you’re feeling not quite the best.  It helps, it gives you the push to get through!

As Promised – Meet the “Guy” that’s Attached to Me for 27 Hours After Treatment!

This is what it looks like in its packaging, prior to the medicine going in.

Due to my white blood cells being low, under 400, the time before last, I started using Neulasta OnPro, On-Body.  This device allows for me to receive the injection I’d normally have to get at the doctor’s office at home – HUGE lifesaver since I’ve been going downhill starting around noon on the day after treatment. Approximately 27 hours after being applied I hear three long beeps and the injection begins and proceeds for the next 45 minutes.

Elizabeth injecting the medicine into the On-Body.

Since I don’t have to come in the next day, my nurses (it was Elizabeth this time), fills the device and then attached it to my arm.  Upon placing it on my arm, I get three beeps about three minutes after she turns it on and then the needle goes in – feels like being snapped by a rubber band.

Now, you may ask what exactly Neulasta does and how it’s of benefit to me.  Basically it acts as a natural protein to stimulate the growth of white blood cells to help me fight off infection while going through the chemotherapy process.  Do you know where white blood cells are produced?  In your bone marrow.  Is there pain associated with bone marrow stimulation?  Oh good lord, yes!

Elizabeth applying the contraption to my arm.

About the time that I start to feel better from being knocked out flat from the chemo, the side effects from Neulasta set in – throbbing pain in my sternum, lower back and hip/upper leg area.  The pain in my lower back and sternum are enough to take my breath away.  To say it’s not fun, is an understatement.

Is there anything I can take to help with the pain?  Yes, I take Claritin..weird, huh??  H-blockers seem to work well with the side effects from most drugs associated with chemotherapy.  Did it work last time…let’s just say if it hurt as much as it did WITH Claritin, I really don’t want to know what it would feel like without (side note, I have a pretty high tolerance for pain, so I’m not being a sissy!).

It’s hard to see, but there’s a thin blue “needle” sticking out from the triangular piece above my thumb.

For this time around I have some pain killers as well…it’s the type of medicine that accumulates in your body with each does, kinda like the chemo.  My fingers are crossed it isn’t as bad, but by the look on Dr. Hagemann’s face when I told her it was uncomfortable the last time, I have a feeling it might be just the same this time around…I’m thankful for her truthfulness 🙂

Good news out of this???  I may not have to use it the next time around.  My counts were high enough this time that we were on the fence about using it, but the kids have had some illnesses going around their schools and I just didn’t want to take a chance.  Another round of good counts and I think we are able to forgo it after round 5.  Yay, keep your fingers crossed!

My new “accessory!”

Okay little buddy, let’s not cause too many troubles this time around!

Round #4 – Here We Go, Downward Slope!

Kim came in yesterday to take me to treatment today! Thank you, thank you, thank you for carving out time and taking off work to be with me today!

 

I was not looking forward to today…pretty much psyched myself out for this one, and dreading it. Just when I had gotten to where I felt decent and could slowly do things that I used to be somewhat of my norm was a good thing…knowing it was coming to an end was depressing. So I kept busy, planned things, cleaned, worked outside, etc.

Meet Dr. Hagemann!

Kim and I arrived at 8am, met Dr. Hagemann a little after that and went over everything – things looked good, we almost decided against using Nuelasta On Body, my counts were that good (you’ll meet the accessory of choice tomorrow – I wear him for 27ish hours after treatment is completed). I asked her a few questions, she answered them and we were ready to go. As we were walking out I asked her quickly if I she wouldn’t mind taking a picture with me, I didn’t have any of us together. Response: “Yes, but can I wear her hat, I want to have the same hat on as you, I think it’s really great you’re both wearing one.” I was so excited! And remember how I’ve said she hugs me and it’s real??? Her arm around me in this picture wasn’t just wrapped around me for a picture, it was holding me tighly, it meant more than I’ll ever be able to tell her.

And the one thing that made me laugh was when she told me she heard me with the girls in other room laughing when I got here. I said oh gosh, my voice is so loud – it’s nice to hear that in the morning, someone upbeat. Guess I was hiding my anxiety about today pretty darn well.

Everything started like normal, pre-meds and fluids followed by a 20 minute rest period and then 4 hours of Taxol and 1.5 hours of Carboplatin. Sonya and my Mom brought us all lunch and stayed until everything was completed. You may ask, was my Dad there, of course! He always gets there for the last 1-1.5 hours, not matter what!

I felt like crap during the entire process today – actually, I still feel like crap, but apparently my coloring looks better now that I’m home.  I took two naps throughout the day – the first being a short cat nap and the second was almost a solid hour as Carboplatin began, it’s the norm. Plus, I only slept 3.5 hours last night thanks to the lovely pre-meds, dexamethasone.

What wasn’t the norm was the awful feeling. It was different, I was actually feeling lousy and nauseous and my coloring was off. I thought I was going to be sick and couldn’t determine if it would make me feel better to do so, but at the same time I wasn’t sure how I was going to make it to the restroom. YUCKY!!!! Let’s just say I must have looked bad enough that when I was getting ready to leave they told me if I remotely felt like I needed fluids to call and I could come in. How would I know if I needed extra fluids? “If you feel like more of a wet washcloth than you usually do and can’t get out of bed as easily, you may need them this time around, and that’s ok.”  Okie Dokie, I’ll probably be seeing you then.

While there today I met two new ladies – Debbie I will see again at my next treatment. Debbie had asked how I found out I had Ovarian Cancer and I told her the story and shared what stage I’m in. “I’m so glad! You’re going to be able to be cured!” Yes, that’s the plan. A woman came in and sat next to her…she shared something very raw and honest and ended it with “I’m so sorry this has happened to you, you’re too young, it’s not fair to you.” No, it’s not fair to any of us, no one should have to be going through this. She told us that she used to pray that she would die first, out of her and her husband. With tears coming down she said that she now wishes it was the other way around because to watch him going through the pain and heartache of seeing her like this was just too much and awful. She never wanted this for him. Was he there with her today?  Yes, he was a smiled at her the entire time, even when his eyes were filled with tears.  My heart went out to her and my eyes filled up with tears, she was a lovely woman. And both of the women mentioned were misdiagnosed!

So although I’m not feeling the greatest, and it will more than likely only get worse, I’m only two treatments away from being done, which will more than likely be the case. This is Debbie’s third bout with Ovarian Cancer – she was honest and said as long as she’s alive, chemo will probably be the norm for her…she wants to live! It is because of myself, young women and even these two women I met today, that I fight in order to spread awareness. If women around the average age for Ovarian Cancer can be misdiagnosed, we’re missing the boat here people on making the signs and symptoms more well known. This shouldn’t be happening to anyone – so be prepared for my voice to break through the disease the “whispers” with a “roar”!

And at the end of the day when I feel not the greatest, we are still able to laugh (Sonya, myself and Mom)

                                     

 

*** From here on out this week, my posts are pre-written and scheduled so I can rest and have one less thing to worry about…enjoy!  P.S. today’s post was written after chemo, I’m a bit out of it…try to ignore the typos, I proofread, but may have missed a few.

 

 

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!