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!)

February 13th – Staging and Diagnosis Day

Two weeks post surgery, 11am on February 20th, we walked back in to the doctor’s office – Mom, Dad, myself and Sonya. They asked how I wanted the appointment to go…same as last time. Which meant I would go back, meet with the doctors, go over everything and then have my parents come back. And of course, the resident walked in again and I started crying, apologized and then I was okay. The rollercoaster of emotions that I go through come in waves, I didn’t see that wave coming.

Dr. Hagemann walked in, I have good news, everything checked out really well, it doesn’t appear to have spread anywhere else, we caught it early. Then came this – “we did have a bit of a surprise though that I wasn’t expecting. You have Endometrial Cancer as well (https://seer.cancer.gov/statfacts/html/corp.html.)  It was a small focused group and it was removed.” The smile she’d had when she gave me the good news had slightly faded, but her calm and steady voice remained. “I’m a little concerned that at 36 years old you have two unrelated cancers at the same time” She explained that Endometrial Cancer doesn’t travel so since my uterus was removed during the hysterectomy it would no longer be an issue. I would need to undergo genetic testing since they were worried I may have a mutated gene causing all of these issues.

Treatment plan was discussed – instead of 4 rounds of chemotherapy they’d determined 6 would be the best route for me to take. The drugs they’d be giving me were Taxol (http://chemocare.com/chemotherapy/drug-info/Taxol.aspx) and Carboplatin(http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx)  I’d receive the medication every third week, and my visits would last 6-7 hours (to date I’ve had one go 6 and another go 7.5, depends on how quickly they can drip everything). I had the option of going downtown to Siteman or staying at MoBap (Missouri Baptist) – my choice, a 10 chair treatment room off the medical offices at MoBap. It was smaller and I wouldn’t have to deal with all the hustle and bustle of the cancer center downtown, and my doctor would be only a few steps down the hall. And since I was recovering so well, I’d start the following Monday.

Only a couple of things left – bringing the parents back and a quick blood draw to make sure my counts were okay. Again, she took the time to meet with them, answer all the questions they had and explain everything.

To say that it wasn’t a HUGE relief that the cancer hadn’t spread any further is the understatement of the year. Out of all the Ovarian Cancer diagnosis each year (22,140 in 2016) only 15% are found in the early stages…if you do the math, that’s 3,321. Keep in mind, out of those numbers my age bracket (35-41) only accounts for 5% – I was extremely fortunate. Not to say I don’t have a long road ahead of me, Ovarian Cancer can be tricky, but I have a very good chance of falling into the bucket of “cured” – Dr. Hagemann reassured me that she still felt very positive about being able to use that word in the future.

Sonya, my Mom and me at our lunch celebration – yes, those are wine glasses!

Needless to say, we were going out to lunch to “celebrate” – I celebrate any positive news, big or small, cancer related or not. The waiter asked what we were celebrating…I looked at him and said, “are you sure you really want to know??” He gave me a strange look (happens to me often, the stuff that comes out of my mouth from time to time gets me the looks) and I told him….I’m pretty sure he’s not going to be asking anyone anytime soon what they’re celebrating or that he’ll have anyone come in celebrating an early stage cancer diagnosis.

Do You Have a Wig – Why Yes, I Do!

10 days after surgery, I waddled (literally) into Lake St. Louis Wigs and Cuts. My back was out from being hunched over because of surgery and I didn’t feel the greatest, but this was something I wanted to have checked off the list before my first chemo treatment. I had no idea where to begin looking and I didn’t have the energy to do the research – no problem, Sonya was all over it! She made the calls, did the necessary research and we’d collectively decided this was where we were headed.

The day I picked up my wig

Meet Heidi, who loves her job and makes the entire process as easy as possible- bubbly, upbeat and more than happy to help! She was the best! I must have tried on 5-6 different wigs…different colors, different lengths, different cap styles. I finally settled on one style, in a shade lighter than what they had in the store. Sonya and my mom were with me and confirmed it was the one! It was a bitter-sweet moment…being the planner I am, I had one more thing checked off the list that was needed. Knowing that I bought it because I would be losing my hair was where reality set it.

My mom, myself and Nancy – wig pick up day!

A week later, the wig was in and I needed to pick it up.  I had one week until I started chemotherapy and I had no idea how I would feel, this was something I wanted to do prior to then…only catch is, I really could have cared less and pretty much was dreading it. Nancy called to see what she could help me with, I told her I needed to go pick up my wig, but didn’t want to go by myself.  “No problem, I’ll come with you and we can grab lunch.”  My mom had some things she needed to take care of with her father (he’s near the end of Stage IV Lung Cancer.  Yes, he was a smoker.  No, it’s not genetic), she didn’t think she’d be able to make it.  As luck would have it, his appointment didn’t last too long and she was able to join us.  I’m not sure they noticed…I never asked…but I was very quiet on the way out there and home.  This was the last thing I wanted to be doing.  The “excitement” I thought I might have wasn’t there.  It looked great, everything was just as I would have wanted, but I wasn’t okay.

Now, you may ask why I have a wig if I don’t wear it. The answer is twofold – I wanted to do everything possible to make my baldheadedness “normal” for the children and I really was frightened by the idea of not having any hair.

The one time I’ve worn my wig – Olivia’s poetry night at school

Olivia is one smart cookie, I knew she’d pick up on the looks I’d get…you know, the ones where they stare just a little too long. Yes, it happens more often than you’d think. I wasn’t sure how her friends would take the whole thing and I didn’t want for anything to upset her. The plan was to always have the wig on when I was with the kids. To date, I’ve had the wig on one time when I’ve been with the children.

I had no idea what I would look like, I wasn’t happy at all about the hair loss but knew it was something that was going to happen.  Originally I had no intention of going bald, unless I was at home.  I had no idea what I would look like and I wasn’t too happy about the whole hair loss thing. The plan was that I would have my wig, a scarf or a ball cap on at all times. I’d convinced myself I’d get two – one short, one long, one brown, one blonde. What ended up happening was one, long blonde wig…Olivia and I actually now have the same hair color, which she loves!

I didn’t think I’d be as confident without hair as I am…it’s a side of me I didn’t know I had in me. It’s a pleasant surprise, one that I am proud of, one that my old self, not too many years ago, wouldn’t have been able to pull off. I’ll be honest, most of the time I don’t even realize it’s gone, except for when I get a cold breeze or the sun is beating down, or I get the little too long stare. People commend me all the time for being able to do so. Will you see me from time to time with my wig…most definitely. More times than not though, it will be my beautiful bald head staring right back ‘atcha, there’s your warning!  I’m embracing this temporary loss of hair.

 

Ovarian Cancer Takes a Lot of Things Part 1 – The Independence of a 36 Year Old Being One of Them

For those of you who don’t know me, I’m not one to ask for help. I’ve always had a desire to do things on my own – and yes, some may say this is a flaw of mine.

I’m a part-time single-mom (remember, I co-parent with their father), with a more than full-time job – throw in all the daily/weekly tasks that need to be done around the house and it’s a lot; but I fend for myself pretty well and try to take care of most things without asking for help, always have. The first of the year this all changed for me. I would need help, I would no longer be the person who could go to the grocery store, take her children to school, make dinner, clean my house, etc, on my own. Being accustomed to being able to take care of those simple tasks, has changed and it’s been one of the most difficult things for me to adjust to .

With the flip of a switch I went from living independently with my children, to having someone in my house most of the time since January 5th. If you have never experienced something like this, it’s difficult to adjust to– it’s why I get upset, it’s why I’m frustrated, it’s sometimes why I cry and even scream (yep, I do all of those things…and you all thought I was positive all the time !). I could go on and on and on about exactly how things have changed, but the top five for me are fairly simple things that are the hardest for me to come to terms with:

  1. No alone time: As I mentioned above, there has been someone at my house almost every day since January 5th. My mother had to basically move in with me. If I wasn’t in the hospital, I was at home recovering from one of the two surgeries. Then the port was placed and three days after I started chemotherapy. If my mom wasn’t there, friends would offer to stay with me so she could have a break and go home. I was used to having down time after the children went to sleep or on the days when they’re with their dad, being able to putts around and do my own thing. Instantaneously I went from one extreme to the other, with no in between. I felt as if my life was taken away from me – I was now dependent upon someone to help me do the majority of things – getting in and out of bed, up and out of a chair…you name it, I needed help with it.

I need my space. I always have. This has been almost the hardest thing I’ve had to adjust to. As time has gone on my parents are more willing to let me have this time when I don’t have the children, but there’s always the “what if this happens” or “what if that happens” that comes in to play with everything I’ve undergone. I have several people I can call to help me and/or stay with me if I’d need something at a moment’s notice. Although everyone is usually quiet and tries to keep to themselves, they’re still there…sitting at the kitchen table behind the chair I sit in, down the hall taking care of something or outside doing whatever might need to be done. Don’t get me wrong, I’m grateful and thankful I have support and a team in place to help…it’s just hard to handle at times and is a reminder of everything I’m going through.

2. The realization that you can’t just go grab a gallon of milk: The neighborhood I live in has a Schnuck’s at one end and a Dierberg’s at the other…my grocery stores are easily accessible. Although I’m not a huge fan of grocery shopping (kinda weird since my family owns grocery stores), I began to miss it. The simplicity of going to literally grab the gallon of milk I’d forgotten or the box of cereal we’d run out of wasn’t an option. I was simply unable to walk around a grocery store to get the things I needed.

The amount of energy it takes for me to do the simplest things is amazing – in the beginning, walking from the car to the store itself wiped me out. Then I graduated to hanging on to the shopping cart for dear life (literally, I was that lady in the store that was using the cart as a walker), to eventually making it through the store like anyone else would. Only catch…I needed someone to help me put the groceries in the car and take them out of the car. Within the last week or two, I’ve been cleared and don’t have the weight restrictions I once did and on my “good days” can go to the store to pick things up…it’s refreshing when I’m able to do so.

3. The ability to drive: In a two month time period I could count on one hand the amount of times I’d driven my car. Most days if someone is at my house, they still drive and I ride. I love to drive my car…it’s my time to decompress, crank the radio up and roll the windows down for a breath of fresh air. It was my time between work and school pick up to sing along to the radio – Yes, I dance in the car and really belt the songs out when it’s one of my favorites. Olivia actually made the comment the other day – “Mom, did you know that you sang every song on the way to G and Poppy’s”. Yes dear, I did..mommy likes to sing to the radio, loudly.

I missed my XM radio…I missed everything the car symbolized to me – freedom and independence. As time has passed and I can adjust to my new-found “schedule” I am able to spend more time behind the wheel – more times than not it’s the 7-10 days before the next treatment. But I’ll be honest, depending on the day, I may just be too darn tired to even think about it. I’m to the point that I will tell friends if I can’t make the drive and they’ll swing by and pick me up, but more times than not I’d prefer to be the driver.

4. Household tasks – laundry, cooking and cleaning: Everyone has their own way of doing things, it doesn’t mean one way is better than the other, it’s simply what we prefer. I prefer to do things one way, whomever is staying with me may prefer to do things another way. I use one cleaning product, they use another. I put something in this spot, they put it in a place they’ll remember where it is. They follow recipes exactly, I like to wing it.

I’m trying my best to not let these little things bother me, but they do. They bother me because I’m not able to do them myself. It’s a reminder that I need help doing things that I once was able to get accomplished on a Saturday morning between feeding the kids breakfast and taking Olivia to dance class. I can no longer do these things on most days…because I’m tired or sick, or both. When I have my good days, I do the laundry and cook the meals…I enjoy doing this, I want to do these things.

The cleaning I’m still not able to manage for one reason or another…I’m still sore from time to time from surgery and I need to be cautious because of my immune system being down. All other things mentioned above, are welcome tasks when I feel like it.

5. Accepting help: This is a MAJOR challenge for me – MAJOR. When people first found out about my diagnosis they’d ask “what can I do, I want to help?” My response was always, “I really can’t think of anything, I’m fine, but if I think of anything I’ll let you know” – which wasn’t true, I had no intention of letting anyone know that I might need a meal, that a play date for one of the children would be great, and so forth. I was going to do this on my own, my parents and I had this covered….nothing could be further from the truth.

Guess what, I soon found out that the old mentality I had of not asking for help would soon change after treatment #1. I was going to need help. I needed to come up with a list of things that could really be beneficial to us. Gradually I let people start bringing meals over – my appetite isn’t the greatest, so they bring “kid friendly” meals, one less thing my mom or I have to worry about. Most recently, I’ve started planning after school play dates for Olivia.

I have never been in a position where things like this were needed in the past. I saw it as being “weak”…yes, I know how that sounds but it’s the truth, it’s what I thought. What I didn’t understand at that time is that our friends and family wanted to help, this was not only good for me, but it has allowed people to feel like they are a part of this process too. No one wants to see anyone go through something like this and when they don’t know how to help, these are the ways in which they’re able to make a difference. If you have a loved one/friend in a similar situation, keep asking, they’ll eventually take you up on your offer.

 

What I’m accustomed to, no longer exists. I’ve had to find a new sense of normalcy and adjust to what that looks like. Along the way I’ve accepted that I need help. For the time being, this is my new normal whether I like it or not. Does it suck? Parts of it do. Does it become easier? Yes. Will it last forever? No. That is the one thing I keep reminding myself…I will get back to the way I once was. I tell myself this over and over…some times my thick skull doesn’t like to listen though. Right now, I take the good days and embrace the things my old self would have done, and on the other days I use the energy I have doing the things the matter, the things I want to be doing, instead of doing the things that “need” to be done.

January 27th – Life Changes – Total Hysterectomy for Ovarian Cancer

Leading up to the 27th they kept me quite busy. I had the two days before to get things done and figured out. On Tuesday I spent the bulk of the day at Siteman Cancer Center (https://siteman.wustl.edu) to complete scans, which would tell us if there were any other large masses from the shoulders down to the legs, and run through a ton of pre-op work and blood tests. I received a call on Wednesday from Dr. Hagemann, while I was driving, she told me she wanted to give me the news as soon as she could. The scans came back clear and the blood work was pretty positive as well, leading her to believe we were tackling this thing in enough time. Whew! That was a bit of a relief!

My brother and sister-in-law drove in the night before to help with the kids and sit with my parents during the procedure. The goal for the weekend was to occupy them enough to keep their mind off the fact that I wasn’t home. Saturday Olivia, Jaxson, Ethan and Emmett went to the City Museum, none of them had been before. They had a BLAST!! It is a unique place for adults and children alike to run and play – Kyle and Mel were convinced someone was going to end up with a broken bone by the time they left– ha! This also allowed for my parents to be able to spend time with me at the hospital as well, which was really nice.

I don’t think I slept more than a handful of hours the night before. We had to be downtown by 5:30am, which meant I needed to be up and going no later than 4:45am. My mind was racing – how bad was this going to hurt? What were they going to find when they removed everything? Was I prepared for the changes I would be going through? What if the cancer was found microscopically in other areas, what do I do then?  How would I adjust to the new “me”?  The list goes on an on, my head was spinning.

We arrived a little before 5:30am and let me tell you…they don’t mess around at Barnes (Barnes Jewish Hospital). I was up in pre-op less than 5 minutes of arriving, and they start exactly when they say they’re going to – the pre-op area was full of staff, moving a mile a minute. Well, now that I think about it, I was her first patient of the day – ha! Only one minor hiccup during the process – apparently having low blood pressure (below 100) doesn’t work so well with the pain management method they usually use…not fitting inside the box with this lovely thing I now have, seems to the norm.

They made a call to the chief of the anesthesia department to ask them what they suggested doing. I’d warned them that my blood pressure would drop to around 85/55 post surgery and wouldn’t come back up for a few days, based on past surgeries. The original course of action was to have been an epidural – epidurals make blood pressure dip even further and can’t be used with that low of a blood pressure. So, what do you do at this point? Catheter pain management inserted at the end of surgery near the surgical site – in my case, they were on either side of the incision. I think it was an ON-Q pain relief system and it stayed in for 2.5 days. I LOVED IT!!! I will ask for them again if it’s an option.

Now, back to the surgery itself…Dr. Hagemman arrived a little after 7am, as calming, upbeat and positive as ever. We went over last-minute details and when my parents could anticipate seeing me – 4.5 hour surgery, an additional 1-2 hours after that. I’ll be honest, I don’t know what time it was when I actually saw them, initially it wasn’t for long, but I was moved to a room fairly quickly. Once all of that was done, my anesthesia team rolled in, got the “good stuff” flowing and we were on our way – by the way, I had 3-4 anesthesiologist, this was in addition to my surgeon and her team and the team behind the microscopes analyzing what was being removed. As if that wasn’t enough, the surgery was taking place in the designated “pelvic” operating area so if she ran into any problems outside of her specialty she’d have access to an array of doctors that would be able to assist. Some of these things, I really don’t need to know – ha!

Everything went as planned, I came out of this surgery significantly better than the previous one. I still remember rounding the corner at the nurses station on the Gynecological Oncology floor and them all doing a double take – no way this is her, she looks really good for what she just went through…has to be her, we don’t have anyone near this age on the floor. I was able to put together a few words and said “thank you, I think”.   We’d still have to wait for the final pathology reports to come in, but Dr. Hagemann felt really good about the way things went and she still firmly believed the word “cured” would happen at some point down the road.

Word of advice – take your own pillows, blankets, etc with you!

The first night was a little rough, which is to be expected. I had a roommate for the evening, she was the nicest older woman, Carol. Her Ovarian Cancer had spread to other parts of her body and she was in for a blood transfusion. I had the bed next to the windows and made sure that when one of us wasn’t meeting with a doctor or nurse the curtain between us was open. I’ve been on the other side and it sucks looking at the wall! My side was lined with a wall of floor to ceiling windows, she needed natural lighting, and something to look at, plus it gave us the opportunity to have casual conversation if we chose to do so.

Every morning, 6am on the dot the doctor’s were at my bedside. First was the anesthesiologist, checking to make sure the catheter pain pumps were working properly, there were usually two of them. Next was my oncology team – the same four every morning checking my incisions, pain management, food intake, determining when I could go home.

Sonya has been there for almost everything – fitting she’d drive straight from the airport to check on me!

I had several friends and family visit throughout my 4 day stay. They brought flowers, and muffins and pastries for my family and other friends that would visit. The children came to visit me on Sunday afternoon and they did pretty well – this wasn’t the first time they’d visited me in the hospital, so they knew what to expect. Thankfully, the heliport was directly outside my window, plus the Central West End is in the flight path for commercial airlines landing at Lambert, so Jaxson and Olivia had plenty of things to entertain them.

By the time Monday rolled around, I was ready to get home! 3 nights and 4 days in the hospital is enough to make anyone ready to be home, plus things were beginning to pick up and became a little bit busier on the floor. I was finally discharged around 6pm and the recovery and waiting period would begin. Two weeks from Monday I’d be meeting with my team to find out the results and exactly what we’d be doing as far as a treatment plan went…two weeks, feels like an eternity, this was the longest period I’d had without any appointments, tests, etc. I thought Monday, February 13th would never arrive.

To my surprise when I got home, Mel (my sister-in-law) had crafted a welcome home banner for me with all the kids – if there is one thing that could bring a smile to someone’s face, this is it!  Although I didn’t have the children the evening I came home, there was something special there to remind me of them!

 

Telling Someone You Have Cancer…Telling Your Children You Have Cancer

How do you tell someone you have cancer? When is the best time?   I’ve done a few difficult things in my life, this ranks right up there with most of them.

Outside of my family, my initial group of friends knew that I was waiting on the pathology report, knew that is was taking significantly longer than we’d anticipated, knew I’d been scouring the internet researching the worst. Those were the first calls I made and the mere fact that I was calling and didn’t text…they knew the news wasn’t good. It was easy to tell almost all of them…they allowed me to cry and talk through what I knew. And I think I told each of them “I’m so sorry I had to tell you this, I know it’s a lot to take in.” Each of them said, this isn’t about me, it’s about you…you need to take care of yourself and not worry if I’m okay. “What can I do?” was the most common question I was asked by each of them. For the most part, they didn’t cry on the phone, and to this day, I don’t think I’ve seen one of them cry in front of me…that was one request I had for each of them…if I saw them cry, I knew I would too. And yes, I cry…on my on time, in my own way.

The hardest part was yet to come, when and how would I tell Olivia and Jaxson. How do you tell a too wise for her age 7-year-old girl that her mother has cancer when she knows that “Grandpa Kamman” (my grandfather) has cancer and is dying, that the doctors will not be able to make him better, and not have her think the same thing is going to happen to you? You see, I’d contemplated not telling them, but when I found out I was going to lose my hair, there wasn’t going to be a way to hide this from them. I had 3 days until my next surgery, if you remember.

First thing I did was contact both of my children’s schools and make appointments with their teachers. I needed to know that the people who spend as much time with my children, if not more during the week, knew what was going on in order to know why Olivia and Jaxson may be acting out or have a change in behavior. They were understanding, had resources for me to use when telling the children and had agreed that if they saw anything out of the norm, they’d reach out to me immediately. I told them when surgery was and when I anticipated telling them – two weeks after surgery, one week before I’d start chemotherapy.

Olivia’s poetry night. She requested the wig, she gets the wig!

If you haven’t realized by now, my children have a two family household, their dad and I are divorced. In determining what would be best for the children, I knew this was something I needed to include their father and his girlfriend in, they needed to know what was going on and hear the words I was using with the children. They needed to be a part of this process so we could communicate about any concerns Olivia or Jaxson may have. For example, Olivia is struggling with the fear of people making fun of me because I’ve lost my hair – she is worried I will get my feelings hurt. Had I not told her dad she asked me to wear my wig to a school poetry night, he would have never asked her why she wanted me to wear it and I would have never known those thoughts were going through her head. Co-parenting with an ex is by no means easy, but had I not done so, that concern would have never been discussed and I wouldn’t have been able to reassure her that people aren’t going to have that type of reaction, that it’s a “brave” thing and shows I’m “fighting”.

The evening we told them, Olivia was sitting next to me, my parents were there as well, along with Chad and his girlfriend. As soon as the word cancer came out of my mouth her eyes almost popped out of her head and she looked at my parents to see if there was anything to be concerned about. We reassured her and Jaxson the doctors were going to help me get better and I was going to be okay. I think I repeated I was going to be okay at least 10 times. I told them I was going to get really sick from the medicine they’d be giving me and my hair was going to fall out, but I was going to be okay.

For several days after they’d ask me to explain to them what cancer is, how I got sick and would they get sick as well, over and over, which I’d expected. To this day, they still ask me questions, but now it’s more specific as to what’s going on in respect to me being tired, not feeling well, or something like that.

Here’s the thing – there is never a good time to tell someone you have cancer, it’s up to you to determine how, when and how much you’re going to tell people. It doesn’t get easier…people with any ounce of emotion will be shocked and possibly not know what to say, some will cry (that is the hardest part for me). Some people need time to process your diagnosis, some people may never be able to process it, may never know what to say…give them time. It may be the first time that person has ever had anything like this happen to someone they care about….if they truly want to be a part of the journey you’re on, they will be. When there are children involved, try to determine what is best for the children, limit the information to what their little brains can comprehend and have a support group in place for them so you can be made aware of things happen outside of the home.

Below are a few resources for telling people, along with a couple of books that help with telling children (I read them more for myself, so I’d know what words to use and how to explain it in simplified terms)

 

Telling Others About Your Cancer – https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/telling-others-about-your-cancer.html

Helping Children When a Family Member has Cancer – https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer.html

 

Books for Children –

https://www.amazon.com/Mom-Cancer-Lets-Talk-About/dp/0764140744/ref=sr_1_1?ie=UTF8&qid=1489525014&sr=81&keywords=books+to+talk+to+children+about+cancer

https://www.amazon.com/Nowhere-Hair-Explains-cancer-chemo/dp/0984359133/ref=pd_bxgy_14_img_2?_encoding=UTF8&pd_rd_i=0984359133&pd_rd_r=7FRGJ77RTA406NRPTVZH&pd_rd_w=dZU1x&pd_rd_wg=jhBwR&psc=1&refRID=7FRGJ77RTA406NRPTVZH

https://www.amazon.com/When-Someone-You-Love-Cancer/dp/0870293958/ref=pd_bxgy_14_img_3?_encoding=UTF8&pd_rd_i=0870293958&pd_rd_r=SJMVRQF5MEF6F7G8FZXV&pd_rd_w=lU4dZ&pd_rd_wg=fcg3t&psc=1&refRID=SJMVRQF5MEF6F7G8FZXV