Getting Past the Initial Shock

For those of you who know me really well, you know I worry. Yes, I’m a worrier..I’ve accepted it and my close friends/family just roll with it – ha! When the pathology report kept dragging out, I’d started researching the worst – Ovarian Cancer – trying to prepare myself, so if I got the call telling me such, I’d be able to listen. Does that thought process work one might ask? Hell no, it doesn’t work! I don’t think you’re ever ready for news that you or a loved one have cancer. If you don’t have some kind of reaction, you’re not human. But I was able to hear what she was saying and ask for everything I could think of…including how bad is it (answer, in case you’d like to know “sweetie, it’s aggressive”). I had the report sent to my email and I knew what I needed to do next.

When my mother entered the house, I’m sure she knew by the look on my face – I told her I had Ovarian Cancer, she flipped out, which is to be expected, and I told her I couldn’t take care of both her and myself right now. I needed for her to figure out what she needed and I needed time. I called her friend, Sonya, and asked her to come over to support my mother because I could not.

My first call was to a friend, a little younger than I am, who is a three-time cancer survivor. Anne is the wife of one of my co-workers whom I became close with during a campaign I managed at work with the St. Louis Blues – strange enough the campaign was for their 2016 Hockey Fights Cancer initiative and Anne was the featured survivor UMB (company I work for) had selected.   Okay, I’ll be honest, I didn’t just call her…when she didn’t answer, I group texted both Anne and Chris…in typical “me” fashion, I went a little over board!

The next 1.5 hours went like this – Anne got back to me and I told her what I’d found out, trying not to cry so she’d be able to understand what I was saying. I knew where I wanted to be, Siteman Cancer Center, here in St. Louis. My first question to Anne was, how do I get an appointment, my doctor doesn’t know anyone there to refer me to? What I didn’t know at the time was that Anne sits on a patient advisory board with one of the doctor’s from the Gynecological Oncology team, Dr. Andrea Hagemann. I didn’t even have to ask – “I’m going to call her office and leave a message and email her”. While Anne was doing that, we’d decided I would call the office to at least get my name on the books – first thing I could get was 2 weeks out. Anne received a response within no time, asking for my contact information and that Dr. Hagemann would see me on Monday afternoon and her team would be contacting me (it was a Thurday afternoon). I went from 2 weeks out, to two business days later having an appointment. I forwarded what information I had and their team started reviewing everything for my upcoming appointment.

I can never thank Anne enough for the manner in which she handled my call – Chris and Anne both knew I had a pathology report I was waiting for and that there was a chance it wouldn’t be good, so they’d been checking in. She was calm, reassuring and positive during the entire process. Although she may not have known exactly what to do, one would have never known. She spent time walking me through what the appointment could possibly look like from her experience, and gave me an idea of what to expect. Anne had prepared me for what I was up for and I’ll be forever grateful to her.

Once the appointment was set, I walked out to inform my mother (and father who had by now made his way to my house) of what was going on, who we were seeing and when. They compared notes to what other doctors from other states had recommended and Dr. Hagemann was on the team everyone had suggested.

I had 30 minutes to pull not only myself together, but my mom, dad and Sonya, because my children would be coming home from school and I didn’t want them to recognize something might be wrong.

I know the question you’re all wondering — you didn’t call anyone, you didn’t tell anyone during that time period? The answer is yes, yes I did. I made the phone calls necessary in order to get my “people” informed so I had support…to be honest, it’s one of the more difficult things I’ve had to do…inform someone that you have cancer.

 

 

 

 

 

Let’s Start From the Beginning

Everyone has resolutions for the start of the year, right?? Okay, some of you are shaking your head, but in the back of your mind you have things you’d like to do differently/change, we all do.

2017 was going to be my year…the year I had no regrets, got my voice back and said/wrote what I felt no matter what the outcome may be (Glennon Doyle Melton said it best in one of her Facebook posts earlier this year – “Try saying what you really feel, what you really see, what you really want, what you really love, what you really mean…”) , the year I started doing things to show my daughter and son there are no boundaries and they can do anything, to start building family traditions with them…it was the year for my Rim-to-Rim-to-Rim of the Grand Canyon…I was going big and bold. My shitkickers were dusted off and I was ready to go!

Thankfully, they were dusted off…I just didn’t know at the time why I’d really need them…January 19th at 12:07pm, I discovered why.

2016 ended with what I thought was a slight UTI, but I just couldn’t seem to kick it. January 2nd came and I went to Urgent Care (AFTER the Winter Classic…The Blues beat the Blackhawks, in case you missed it! Let’s Go Blues!!), they gave me another form of antibiotics, but nothing. Finally on January 5th Mo, who’s part of my “Home Team” and an NP, told me to go to the ER this had been going on long enough. Reluctantly I agreed and had my mother take me. What I would find out at 1:46am was that I had a “large” mass on my right ovary, they would be contacting my OBGYN and that I’d be staying overnight to manage the pain. What I haven’t explained is the amount of pain I was in…no, I wasn’t pregnant, but felt like I was in the early stages of labor.

The large “cyst”.

The concern I should be feeling at this point hadn’t set in yet, that would come the next morning when my doctor arrived at the hospital. My first question: “large mass means what?”. I’m a visual person, I needed to know what we were dealing with. Answer: “10cm or so, it’s a complex/dermoid cyst, nothing to worry about, it will be removed and you shouldn’t have any problems. We’ll biopsy it just to be safe. Oh, and I’ll draining the other cyst in your left ovary, it’s about 6cm but appears to be only fluid”. Do what?!? I have not one, but 2 cysts of substantial size on each of my ovaries…I was now worried. I spent two more nights in the hospital, to be released to rest at home for two days before returning for surgery on January 11th.

Now, I’ve had several surgeries, no big deal – they’ll go in, remove what they need to and be on my way. I was worried, really worried. You see, I’d returned from a trip on December 31st and told my mother on January 1st that I was having genetic testing done to make sure I didn’t have a Breast Cancer gene since my grandmother on my Dad’s side is a Breast Cancer survivor, something was telling me I needed to have this done.

The small “cyst”

7:30am on January 11th I headed back for surgery, the same time I was supposed to be boarding a plane for Denver with my children for MLK weekend, their first time snow skiing. Surgery went as planned, nothing looked out of the norm, I should have the results by the end of the day on Friday, January 13th. …the 13th came and went, as did the 16th. The morning of the 17th I texted Dr. McDonald to see if she’d heard anything…the response, “I’m giving them until after lunch and then I’m going to see what I can find out, I’ll keep you posted”…18th, nothing.

Morning of the 19th I rode with my Mom to take the children to school, wished one of my closest friends a happy birthday and safe travels, and told myself I’d give her until 1pm, then I was going to text again…she beat me to the punch.

When a doctor starts a phone call with “How are you feeling?” and not “I have good news” you know things aren’t headed in the right direction. Although I can’t remember word for word what she said, it went something like this… “honey, I have some bad news. I’ve been contemplating all morning if I should have you come in or call you on the phone. You have Ovarian Cancer and we need to get you to an Oncologist soon…” No matter how much you prepare yourself for the news, you’re not prepared. I asked her to give me a second and I cried (more like sobbed), took a deep breath and started listening and asking questions….then I sat in the kitchen and waited for my Mom to get back.

 

Meet My “Home Team” — Okay, it’s really more like a Village!

My “Home Team” – L to R (back) Jim, Joe and Lesley, Frank and Nancy, Steve and Kae, my Dad, my Mom, Peggy, Steve, Donna, Kim, Jacob, Erin, Jason and Lilly. L to R (front) Mo, Gigi, Meri, Jaxson, Ted, Olivia, Carrie, Harper, Tracy and Britlyn (Behind the camera – Amy Jackson)

 

“Home Team” – the people you can rely on no matter what, the ones who will answer the phone at 2:30am and drop everything to help you out. Or in my case, the ones that drop by the house at 6:30am to grab something out of Olivia’s room because she forgot to take it with her and she needs it for school, or have lilies planted in my patio pots by 8am on a Monday morning so they would bloom right around Mother’s Day.  I could not have made it through the last two months without any of these people.

Saturday afternoon those that were able to come, showed up in mass quantity to support me buzzing my head. They have helped with meals, getting to appointments, loving on my children when I wasn’t feeling the best, visits and countless messages and phone calls…many of them aren’t pictured because it wasn’t feasible, and you all know who you are – my “Home Team” spans from one side of the country to the other!

You may ask why I had a party to “celebrate” this occasion. The answer is twofold –losing my hair was going to be on my terms, it is the only decision I’ve had a say in during this entire thing, and whatever I needed to do to make this easiest for my children (and let’s be honest, myself) was what I was going to do. So instead of shaving my head with merely my parents and Olivia and Jaxson, I thought it would be better to have distractions and a large group of people to lighten the mood a bit. And it seemed to do the trick!

My face says it all in this photo…and yes, Olivia and I make the same faces – ha!

The day was perfect, we couldn’t have asked for better weather, which allowed for everything to be done outside – the kids were able to play in between turns and there was plenty of room for everyone. Leading up to the moment I had to take a few deep breaths, followed by “Okay, let’s do this!” I had no idea Olivia and Jaxson would be o excited to grab the clippers and have at it…let’s just say they are very well hidden!

Jaxson was a little too excited about getting started

Olivia started the process, with Jaxson following. I hadn’t anticipated they’d want to just keep taking turns, but that’s what ended up happening. With the help of others the two of them literally divided and concurred my hair, with Lilly stepping in at the end. I was very proud of them  you could hear me asking them “How’s it look?”, “Everything going okay?” or on most occasions, me reassuring them they were doing an excellent job!

https://youtu.be/vM73B6Y-hPc (link to video)

Although it may have appeared that I was on board by my smile and reassuring words, that was not the case. Leading up to Saturday, I was trying to convince myself it might not all fall out, you can wait a little bit longer. Let’s just say the brush at the salon earlier in the afternoon said otherwise…it was full of hair, which made me feel better about the decision.

This is just from combing my hair out – I felt awful for the poor girl!

The apprehension wasn’t so much about losing the hair, it was more that there wasn’t going to be a way to keep this to myself much longer. I was about to go public with the fact that I have Ovarian Cancer and I wasn’t quite sure I was ready. Would people look at me just a little too long or stare from afar? Would they run in the opposite direction, or hug me just a little longer than they should? Or would they avoid me and the fact that my Cancer diagnosis was staring them straight in the face? These are all things that ran through my head – for someone who HATES having the spotlight on her, it was something I was/am dreading.

I realize this was a difficult thing for some of my friends and family to watch – it made everything more real for them too. Up until that point I didn’t look too sick, minus the weight loss, dark circles and fatigue…oh, and the lovely port, can’t forget about the lovely port (more to come on that!). But they showed up, they showed up and put any feelings aside they may have in order to make sure I had what I needed in order to get through this process…I will never be able to thank them enough (including those who were there in spirit).

All in all, losing my hair wasn’t really that awful. I didn’t look as bad as I thought I might, everyone seemed to be holding it together pretty well, and all of the children seemed to be okay with what had transpired. It was exactly what I needed…I got through it with friends and family around me for support, with a smile on my face, all while enjoying a lovely evening.

And to answer the question you’re all dying to ask – “Are you going to tell us how you found out?” Yup, sure am! For the next couple of posts we’ll rewind a bit and catch up to the present.

 

Helpful tips if you, a family member or a friend find themselves throwing a party for this particular reason:

  1. Allow yourself enough time to prepare, if you have the luxury – I knew from the first appointment with my oncologist that I would be losing my hair. Ask, they will tell you, they don’t sugarcoat things at all!
  2. Customize something special – for me it was a stemless Tossware champagne flute I found on Etsy (You Got Personal is the “store” –https://www.etsy.com/listing/275635454/plastic-personalized-champagne-flutes ) . This gave everyone something to take with them, they were a huge hit!
  3. Go buy a new pair of clippers. Just do it, save yourself the worry of “What happens if the clippers I’ve had for the last 10-15 years can’t quite cut a whole head of hair?” Target has plenty to choose from at very reasonable prices.
  4. If you are able to, find a photographer, preferably someone who knows you well to capture the event. Amy (Farnsworth) Jackson didn’t bat an eye when I asked her to do so…I knew it was out of the norm, but she didn’t hesitate! Ask them to not only take photos of the actually hair loss, but also capture a few great shots with you and your loved ones with a full head of hair one last time – I’m so glad I did!
  5. Make sure others take photos and videos as well..you have no idea what is transpiring and it gives you an opportunity to see everything after.
  6. Do something special for yourself – get your hair done or a mani/pedi – by this point, you deserve it!
  7. Try to enjoy the gathering..as frightening as the whole process is, allow yourself time to smile and laugh and remember that you’ve got this and everyone is there for you!

 

 

Amy Jackson – The woman behind the camera!
Lesley
Steve
Kim and Erin
Carrie – we’ll refer to her as my “sister”
My Dad!

 

 

 

 

 

 

 

 

 

 

 

I

Yes, I have Ovarian Cancer…

Many of you are completely caught off guard by this post. I’ve seen the reaction multiple times – you’re sitting there with your mouth wide open, your hand possibly covering it as you stare in shock and possibly start to tear up/cry. And my first response back is “I’m okay, I’m going to be okay…I have to be, I don’t have a choice”. And most days, I am okay.  I have an early stage of Ovarian Cancer and had a focused form of Endometrial Cancer as well (the Endometrial Cancer was a surprise we weren’t anticipating), and I’m lucky to be with a team of 8 wonderful doctors at Siteman Cancer Center in St. Louis.

To date I’d shared the news with a small group of family and friends in order to allow myself time to focus on my children and me – I’ve been through a lot in the last 7 weeks and needed some time. My first priority was to make sure Olivia and Jaxson adjusted to our new found state of living for the time being, and that they understood as much as they can for their ages. Next was getting through my first round of treatment, which I started 2 weeks ago tomorrow.

The easiest way to go through the hundreds of questions I get when people find out is a quick Q&A, so here we go:

You have Ovarian Cancer??: Yes, I have Ovarian Cancer, at age 36. No, there aren’t many of us running around in my age bracket with this awful disease. And although I’m not regularly asked, the look on one’s face is enough…the prognosis is positive, as is my outlook, but I have a long road ahead of me.

How are the children, do they know?: They are doing remarkably well for what we’ve been through. Yes, they are aware that I have cancer. If there was a way I could have kept it from them I probably would have, but that wasn’t an option. Being that I was in and out of the hospital 3 times in the month of January, they were beginning to worry, plus the treatments would make me lose my hair and I wasn’t really sure how you explain that without giving them the truth.

Jaxson can only focus on my “haircut” and “new hair” (that’s what he calls my wig). And Olivia asks really informed questions for a 7 year old. For instance: “Mommy will I get sick too?” Me: “No honey, you can’t catch cancer.” O: “No, I mean when I’m your age, am I going to get sick just like you?” After quickly trying to rack my brain for what to say I told her the truth. “I’m working with the doctors to try and figure that all out.  I’m hopeful that that will not be the case and you’ll be just fine.”

Are you Scared?: The answer is without a doubt, HELL YES, I’M SCARED! The “c” word in and of itself is scary enough, add ovarian in front of it and it’s a whole new ballgame! Some say I’m really brave and handling this very well…I’m not brave, I’m just doing what needs to be done, the most graceful way I know possible. And some days that may mean I come across as a sailor who curses too much, but ends everything with “but I know it could be worse, so I’m okay”

Did you have any signs?: Yes, almost all of them, but I didn’t recognize them. The one thing you have to understand is that they mask themselves as other things. I blamed work, things going on in my personal life, the upcoming holidays, etc.

What are the signs you might ask – loss of appetite/feeling full quickly when eating, loss of weight, exhaustion, heartburn, bloating (didn’t have this one), frequent urge to urinate and a couple others. The recommendation I will make to everyone is do yourself a favor, if you have any symptoms that last longer than 2 weeks, go to the doctor just to verify what you think in your head (mine was telling me stress) is actually what’s going on. Clearly, I did not, so I’m not one to talk on putting things off – ha!

Do you have to have Chemo?: Yes, I have 6 treatments, every 3 weeks. They last 6 hours each time. For those who  have received chemotherapy, the next question is what drugs – Taxol and Carboplatin – they’re hitting me pretty hard since I’m young and can recover better than older patients (average age for Ovarian Cancer is 61).

What about radiation?: Not at this time

How are you feeling?: As of today, pretty decent. I’m at the midway point between treatments and am able to get a good chunk of things accomplished. The number of “good days” will dwindle as the treatments go on and my “dip days” will increase in duration, so I’m trying to do what I can, when I can right now.

You had a party to shave your head?: Yup, sure did! I haven’t had much of a say in any of this, so when it came to when my hair would fall out I wanted to make the choice as to when it went, not taking a shower one morning and seeing it falling out in clumps on the floor. I also wanted the children to play a part and have our friends and family around that were close enough to participate. This was a way for me to have a voice – I’ll introduce my “Home Team” tomorrow — it was a really nice time!

Now that that’s done, you’re probably wondering why a blog. Why not? There are a little over 22,000 new diagnosis each year (makes up less than 2% of all cancers diagnosed annually), and each year a little over 14,000 lose their battle to the disease (5 year average survival rate of all stages combined is 46.2%). Most people don’t event know what to look for and those in their 30’s don’t have it on their radar as a possibility. So, why wouldn’t I write about my experience if it couldn’t help another young woman in the same situation. Why not try to raise awareness?

To start I’ll catch up on what’s happened to date, introduce you to my wonderful team of nurses and doctors…I have a lot of them (!) …and include some fun along the way! Be prepared, I have big things in store for Ovarian Cancer Awareness month in September an I’m going to need all hands on deck for support!