And here we are after a 10ish week break about to begin the next chapter of our cancer story. I say ours because while mom is the one that has cancer it also has impacted and shaped all of us. It is a part of our story and who we are.
Summer has been good to us. We enjoyed family vacations and one on one vacations. There’s still one left (mine). Mom, dad and B enjoyed a trip to London and saw Paris. It was a trip she had planned to take before all of this cancer nonsense began. It was their bookend to a wonderful summer. I say this because Monday she will get blood work done and then Wednesday she will have an appointment to discuss her PARP inhibitor.
We don’t know how the PARP inhibitor will effect her and as I said before the goal of the drug is to prolong the time before recurrence. So she will be on this pill until one of two things happen: 1) the side effects are so damaging that she can’t be on it OR 2) the cancer comes back and progresses while she’s on it.
So that’s where we have been and where we are heading. I’m sure there will be bumps along the way but it’s nothing we can’t handle because we have each other. As always thank you all for always praying for us. I don’t think I could adequately express how much the love and support we have been given throughout this means to us.
We are not the same people we were a year ago today. In some ways better and broken in others. Living in fear and living with a deep appreciation. This is going to be a long one. This is the story of June 24, 2016.
It was a Friday and I was in the cell culture room and I looked down at my phone to see a text from my mom saying her gastroenterologist was sending her to the ER for a CT scan. She had been experiencing abdominal pain for some time. She assumed it was Celiac Disease or IBS related. On Father’s Day she came to the decision to make an appointment with her gastro because the pain was so intense and she wanted to make sure nothing serious was going on.
My dad came home early that day which was rare and a gift. He decided to take her to her appointment and then was there to drive her to the ER. Her gastro believed she was either impacted or had fibroids and may require surgery. I’m not going to lie I felt smug. As I read the text I thought see I told you to go to the doctor weeks ago and you wouldn’t need surgery. Never have I been more wrong.
My sister was watching Julian and I came home early that day so she could see my mom before she headed to volleyball that night. I would head there after my husband got home from work. She visited mom and told her she would be back to visit after her game. Mom told her not to be silly and that she didn’t need to come back. She had yet to receive her CT scan results but assumed it wasn’t something incredibly serious.
My husband told me I could drop off Julian at his work and head to the hospital to see mom. My response was that I could wait because it probably wasn’t serious. And then it happened, as I was sitting on Julian’s bed recording him “sing/play” Hey Jude on his piano…a text came in from my dad “what time are you coming to the hospital?” Panic ensued as I texted him back. I called my brother instantly. He also received a text “mom wants you to come visit”. My stomach dropped. Less than 30 minutes ago she had just told my sister it was silly for her to visit and now they want us there. I called my husband and packed a book bag for Julian and picked up my brother on the way.
After we dropped off Julian I told my brother I had a feeling that this was one of those moments that would change our lives forever. We got into the hospital and hunted down the wing she was in. It’s like we were moving in slow motion. They had admitted her as a surgical patient but as we were walking I kept seeing signs with the word cancer. The buildings were just connected but seeing the word as we walked made my stomach drop. And every time we passed another sign that said cancer I felt more ill.
We got in the elevator and got to her room. She was the second patient so when we walked in I could only see my dad pacing near the window. I can’t even imagine as a parent what it must have been like for them waiting for us to get there. When we reached mom she asked us to sit down. She uttered the words “It’s ovarian” and I burst into tears and remember saying “no mommy no” repeatedly. I don’t recall a time ever calling her mommy but I guess in that moment I went from 29 to a terrified child.
At this point it was just the four of us there. We were missing one last piece to the puzzle. If I could’ve spared Lex the pain we were enduring I would have. If I could have texted her and said stop don’t come in here and just enjoy being happy for another second…I would have but I couldn’t. So we just talked in a fog and waited for her to arrive.
After sitting there for a bit they had to check mom’s vitals or something. Lex and I took this opportunity to go outside to call our husbands. We unknowingly took the service elevator and were trapped because we didn’t work there. Luckily an employee got on and swiped their badge so we could get off the elevator. I was kind of glad this happened because it gave us a funny story to tell when we got back to mom.
We each called our husbands, we each called a childhood friend that have been like sisters to us for over 20 years and I texted my group of close girlfriends. When we tried to get back in they wouldn’t let us because we didn’t have our IDs and it was after hours. Our IDs were in mom’s room. Eventually they let us through. Another funny story we could tell mom. We were 2 for 2.
After being there for a bit mom was starting to get tired so we left. At this point all we knew was that she had what they suspected was ovarian cancer and it was NOT good. I got home and I held my breath when I walked into the house. I could barely speak. I knew if I did I would start crying and I didn’t know if I could stop and I didn’t want to scare Julian. I went into the bathroom and turned on the shower and sat on the floor and balled my eyes out.
So that’s where we were at and it is much different than where we are at today. Mom has endured a biopsy and chemo and genetic testing and surgery and more chemo and WBC shots and blood transfusions. We have enjoyed an entire year of holidays that a year ago we didn’t think would come. I personally have undergone my own personal growth. I have started yoga and therapy and anti-anxiety medication. I have begun to approach life in a completely different way with a deeper appreciation for every day.
I don’t know what the next year will bring but I know I am strong and I know my family is strong.
Hello, it’s been a while. Almost a month since the last time I wrote a post. The reason is a good thing. We’ve just been over here living life. Mom was getting chemo once every 3 weeks and other than that we’ve just been enjoying summer. Mom has been making up for last summer. Watering her flowers without intense amounts of pain and going on vacation. We don’t talk about cancer or death like we were. But things are starting again or ending, I suppose. All depends what the scan says.
Today mom will have her final chemo for this course. This could potentially be her last chemo for a very long time but that all depends on the scan. Today she met with her oncologist and here is the game plan. Chemo today, scan next week and an appointment to go over the scan on July 3rd. Something about seeing the words scan next week makes my stomach turn. I guess it’s because I know how we all get after a CT scan and during the waiting period. Hoping for good results and overanalyzing how we will react if it’s bad news. It’s been a rollercoaster and this is just how we are programmed at this point.
So if the scan is clear mom will start a drug called a PARP inhibitor. It is a pill she will take until the end of time. The PARP inhibitor is a drug that treats cancer. Specifically patients with BRCA mutations like mom. It makes the cancer unstable so it can’t grow. It doesn’t extend a person’s life but extends progression free survival. Progression free survival is the amount of time a person is living without their cancer growing and spreading. The downside to these drugs is that over time the cancer gets smart and figures out a way around the drug (a secondary mutation) and then you need to find a new drug because the current one becomes ineffective. I’m not saying this to be a downer. Just scientifically this is how these drugs work.
So two weeks of limbo and then some answers and a plan going forward. As always thank you all for your love and prayers and support throughout this insane year!
When Julian was born I was often told I had a second or third child attitude towards certain things in contrast to a new mom. It most likely had to do with the fact that I was too exhausted to have everyone constantly disinfect their hands before holding him because he cried around the clock. I thought about this a few months ago with regards to my mom and her chemotherapy.
A couple weeks before her surgery back in September Julian came down with a cold. It was his first cold since she had begun chemo and it totally freaked me out. We had been visiting her most week nights and I quarantined him during that week. I couldn’t let him be responsible for getting her sick and I feared her body couldn’t fight the infection. She told me not to worry and that she still wanted to see us.
That brings me to the counts. Before every chemotherapy they do a blood work up. They measure a lot of things but my main focus has become these three: white blood cell, platelets and hemoglobin. Every week I wait for the text message with her latest counts. If her white blood cell count was low I would know to stay away if we were feeling under the weather. If her platelets were low we would know her blood might have a difficulty clotting. And if her hemoglobin is low, well we know that without a blood test. After so many weeks of chemo my mom has become a wizard and can tell when her hemoglobin is low.
Yesterday I ran into my parents at target. I saw this woman walking in front of me and I thought it was my mom by the way she was dressed and the way she walked. So I began to follow her. Luckily when the woman stopped and turned it was my mom because that could’ve been an awkward encounter and a bit stalkerish. Anyways we were walking around looking for my dad and she was a bit out of breath and she told me her hemoglobin was low. Sure enough when they did her blood draw today it was and they’re giving her blood as I type.
I should be walking into work right now. But I’m not. I’m just sitting in my car. Today is her last day of chemo for this course. Today is my blood test and genetic counseling appointment. I know what to expect and honestly nothing is going to happen today. Except I give my family history, they’ll give me some odds and then I’ll get my blood taken. But honestly I have no desire to leave my car. The sun is shining and country music is playing. It’s quite lovely.
**UPDATE** I did get out of my car and go to work. And now I’m just sitting at my desk waiting. Waiting to go to this appointment. This is literally the simplest thing and I won’t even be getting results today and I don’t even have cancer. But when I went to my mom’s genetic counseling appointment with her the gene was a hypothetical. We THOUGHT she had it based on her age when diagnosed with breast cancer and the fact that she had breast and ovarian. But we didn’t KNOW…we didn’t know which BRCA gene. And now we know. So now they can give me very specific statistics based on this gene. And it’s weird and my appointment is at the Cancer Institute because that’s where they had an opening and I don’t have cancer and I feel super dramatic but the whole thing is weird and strange and odd and weird.
**UPDATE** Everyone at the Cancer Institute was incredibly kind. The receptionist that checked me in asked how are you? And she was incredibly sincere when she asked. It was such a comfort. The genetic counselor explained everything really well. I have a 50% chance of getting the BRCA2 gene. If I have the gene mutation screening and surgical options were discussed in order to reduce my risk of getting breast and/or ovarian cancer. It made me feel a lot better knowing I could be proactive about my health and that I can take control in some sort of way. So it’s a flip of a coin and in two weeks I will know.