We Can Breathe

Mom and I sat at Bob Evans today barely speaking. She kept asking if she heard the doctor right. She asked if he truly said the larger mass next to her colon was in fact so small that they could barely measure it. He did. We were in shock. A happy shock but still in shock and trying to process the gift of good news we were given today

This morning at 7:45 I met my parents at her appointment with her oncologist. I gave my siblings updates letting them know we were sitting in the waiting room and again when they took us back. I didn’t want them to have to wonder if we were talking to the doctor yet. 

The nurse called mom’s name and took us back. She took mom’s weight and blood pressure. She looked like she knew bad news (later we discovered it was just a case of the Mondays). When you are waiting on news you try to read people. 

We sat in the room anxiously awaiting her doctor’s arrival. When he came in he asked about their vacation. How long they went? If they had any future vacation plans? And we were just sitting there thinking…ok just say it already. And then he said it “your scan looked good”. He then elaborated as we picked our jaws off the floor. He said the larger mass that is adjacent to her colon is so small they can barely measure it. He didn’t even mention the smaller mass that was next to her spleen. So I’m assuming it’s gone. He said her CA125 was in the 30s. 35 and under is normal range. So she’s either normal or close to it. 

The game plan is 3 more cycles (9 weeks) of chemo and then he will put her on a PARP-inhibitor drug that she will take for life. He said this drug has prevented cancer progression in some patients for up to one and a half years. 

10 months ago today mom was diagnosed and our lives changed forever. The fact that her CA125 at diagnosis was over 9,000 and today it is in the 30s is an amazing blessing. The fact that chemo is still working is a blessing. Let’s face it all of this is an incredible blessing and we do not take that for granted. We are incredibly grateful for all of this. And incredibly grateful for all the people that have been there for us, prayed for us, asked others to pray for us and let us know we are not alone. This isn’t over but today is a gift and I will take it, appreciate it and ride it out as long as possible. 

And So It Begins

Today the cancer spring break ends and the next chapter begins. The tone of the chapter has yet to be determined but it’s all starting again. Mom gets her blood drawn today, CT scan tomorrow and meets with the oncologist on Monday morning.

It’s a very strange feeling to know we are approaching another life changing day and time has become an interesting concept. I feel like we get into these hurry up and wait moods. The desire for time to hurry up so we can check another holiday off the list and wanting to freeze time so that day lasts forever.

Part of me wants Monday over with so badly and part of me wants to stay in a moment where we don’t know what’s going on. She hasn’t had a CA125 since right before she began cycle 2 of this course. We have no indication whatsoever if chemo was still working. We are going into this scan blind.  So what am I going to do this week (as my therapist always asks)…well I’m going go to yoga, spend time with my family and try to live in the moment.

Counting Down

When I was little my parents would sometimes drop me off at my Grandma Carole and Papa Joe’s house for the weekend.  I remember on the day they would come pick me up I would count down because I looked forward to seeing them.  We lived about an hour and a half away and I knew what time they were supposed to show up so I would count TV shows.  I would watch Nickelodeon and tell myself  3 more episodes of whatever show was on and then my parents would get there.

Today I felt like that waiting for them to get home from Disney.  And this has barely anything to do with mom’s cancer.  It has to do with the fact that I spend four nights a week at my parent’s house with Julian.  I see my sister almost every Friday over there and I really enjoy my family’s company.  Sure the reason in the beginning we were going over there was because I wanted to spend as much time with my mom as possible and I didn’t like being at home thinking about everything that was going on.  But now 10 months later it’s our routine and I like that routine. It’s not always rainbows and sunshine.  We get on each others nerves and know what buttons to push but when push comes to shove we show up for one another, we have fun together and we truly love each other.  If I had a choice I would choose these 4 crazies every time.

It’s Complicated

I began my career in research in October 2009 after graduating with a B.S. in Biotechnology. I started out in genetics but my end game was always cancer research. After 6 years in Genetics and two lab changes due to funding issues I found myself in a cancer biology lab in 2015.

My motivation for cancer research was my mom’s breast cancer diagnosis in November 2000 as well as my grandparents. 3 out 4 had been diagnosed with cancer during their lifetime.

The lab’s focus is EHE (epithelioid hemangioendothelioma) which is a very rare cancer and GIST (gastrointestinal stromal tumor) and finding targeted drugs for these cancers. Since joining the lab I have attended quite a few seminars and listened to people speak about their research. But it was never like today.

Today’s topic…ovarian cancer. This is the first seminar I have attended about ovarian cancer and it was given by a guest speaker from Chicago. I am not required to attend these seminars but I chose to attend today.

Most seminars start the same. The basic information about the disease, number affected, number of deaths and then they get into mechanisms and their research. Today was no different. I have a stack of ovarian cancer research papers on my desk. It’s one of my coping mechanisms to just learn as much as I can. So it was slightly unexpected what happened when she spoke of the mortality rate for advanced stage patients. I wanted to jump out of my skin and a tear trickled down my cheek. The numbers weren’t shocking. I had read these numbers a million times.  But hearing this woman say it out loud…well I guess what it is…is that you hope you’re being dramatic. You hope that it’s not as scary as you think and that maybe you’re reading too much into it. So hearing a researcher in the field say it…I guess it just triggered something.

As the presentation continued she showed diagrams and actual pictures of patient tumors. On the diagram it had yellow circles to indicate the places the cancer spreads in advanced stage patients. I recognized the locations from mom’s CT scan before surgery in September. The actual pictures of patient tumors were intense and it’s pretty amazing that surgeons can remove as much as they do. It gave me a new perspective. It made me feel even more blessed that nearly 10 months later we still have her.

I hear people say a lot “why can’t we just cure cancer already?” I understand the frustration. I really do. And the only thing I can say is it’s complicated. There are so many mechanisms going on in the human body it’s insane. And with cancer it’s not one size fits all. For example with ovarian cancer, you have sub-types within ovarian cancer and sub-types within that. My mom doesn’t just have ovarian cancer. It’s High Grade Serous Carcinoma which is an epithelial ovarian cancer and she also has the BRCA2 mutation. So it’s hard to find a drug that can treat an entire patient population when people are such individuals.  A drug that works for most may not work for everyone or a drug that has been working for a while may stop.  This can happen when the cancer develops another mutation and then you need to find a drug to treat the new mutation.

Sitting through this presentation I had many thoughts.  At times I considered leaving but I was eager to hear if she spoke of any treatments that we hadn’t heard of or thought of.  I also felt like I needed to find a local lab that focuses on ovarian cancer research and join it ASAP.  And while I won’t be joining such a lab tomorrow  I do hope that’s where my career takes me.

Palm Sunday 

My in-laws live an hour and a half away so we split the holidays. My family gets Thanksgiving, Christmas Eve & we celebrate Easter on Palm Sunday. My husband’s family gets Christmas, Easter & we celebrate Thanksgiving on Black Friday. So today was our Easter at my parents’ house. 

Early in the week I didn’t think we would get to celebrate today. Julian had a fever all week but it finally broke Thursday night. So by the time we were ready to celebrate he had gone 72 hours without a fever. 

It was a beautiful day. The sun was shining and it was warm. Which is insane considering Friday I wore a hat and winter coat to work Friday. But we were blessed with a wonderful “Easter” day and my mom made a gorgeous flower arrangement per usual. Julian did Easter egg hunt on the deck and got an Easter basket and played with Legos. We are an incredibly blessed family and I don’t take these moments for granted for a second. 

A Break

Mom had chemo Monday and now Cycle 3 is over.  This course of treatment is over and she’s headed to Disney World next week.  She will have a CT scan on April 20th and then meet with her oncologist on April 24th.  From there we will find out what’s next treatment-wise.

Julian has been sick this week.  A low grade fever that doesn’t seem to want to go away.  I took him to the pediatrician and his ears look good and he tested negative for strep.  This week is probably the longest I’ve forgotten what’s going on.  I haven’t seen my mom in about a week because of the germs and when we talk it’s about how Julian is feeling.

When I think of my family I don’t think about what’s coming up with this cancer nonsense.  I think about the fact that they’re headed to Disney next week.  No further treatment is scheduled for mom.  Now that doesn’t mean she won’t have future chemos or whatever but nothing is scheduled until the CT scan on the 20th.  So I dub this cancer spring break.  A break from treatment and a time for mom to enjoy the most magical place on Earth.

**all you need is faith, trust, and a little pixie dust**