Before I get into any details I would like to say this is a positive blog. We had a scare Saturday night into Sunday morning that turned out to be a full circle positive moment.
Saturday mom wasn’t feeling her best. As evening approached she began to experience abdominal pain and cramping. There were talks of going to the ER but she wasn’t quite there yet. At around 11:30pm it was decided she would head to the ER. When they got there she flashed her cancer card (she literally has a cancer card) and they put her in a room secluded from other patients because of the whole compromised immune system thing.
They were there quite a while and they ran some tests. And then it happened. In walked the doctor…the very doctor that had told her of her ovarian cancer on that miserable day in June. A little over a year ago this woman told mom she had ovarian cancer and it did NOT look good and Sunday she was looking at moms most recent CT scan and said it looked good. The very person that had the job of delivering awful news last year, also go to be the one to deliver the good news of this scan and told her that her CA125 is at 21. Which is amazing because a year ago it was over 8,000. If that’s not full circle I don’t know what is. The cause of her abdominal pain is thought to be from the stuff they gave her for her CT scan Wednesday working its way out of her body. Her and Dad headed home around 5:30am. She was tired but the abdominal pain had subsided.
That brings us to today. Going into this appointment we felt cautiously optimistic. We knew her CT scan looked good but you never know what the oncologist is going to say. He told us the scan looked good. There are some nodules they will keep an eye on (could be scarring or lymph nodes). And then he delivered the best news of all…a 10 week break. A blood test they did revealed her platelets were pretty low still from chemo. They are going to do monthly blood draws to ensure the platelets are rebounding. They want all blood levels to be stable before they start her on the PARP inhibitor. PARP inhibitors have side effects similar to chemo and damage the good stuff like your platelets, WBC and hemoglobin. They want you to have a solid foundation before you start them. The PARP inhibitor gives a person roughly 18 months before their ovarian cancer will come back. Could be less, could be more. Everyone is an individual so only time will tell.
I know it’s only July but it feels almost like the start of a new year and a fresh start. It’s the start of a new chapter. New lessons to be learned and a new treatment plan to understand.
As always, thank you all for your love, support and prayers. It has meant more to us than we could possibly say!
Mom’s CT scan is tomorrow and I’m back in research mode again. CT scans have a way of bringing this out in me. I have a copy of her CT scan from April. There were a few questionable things on that scan. So while we wait for the results of her new scan I am dissecting every word of the old scan just like I did in April like Im some sort of detective. Looking for clues of what the future may hold.
We will learn the results of the scan July 3rd and I’m trying to prepare myself with any questions I may have. I know there is no logical way to prepare for what he might say and he may have good news. But waiting is hard and this is how I cope.
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.
Today’s post is going to be a little different. Instead of writing a blog I’ll be sharing my vlog (video blog) about what it was like traveling with Julian, why I was hesitant going on the family vacation and what ultimately changed my mind.
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!
If I’ve learned anything this year it’s that things are constantly changing whether it be good or bad. I have to admit I’ve always been quite the pessimist. I had this notion that if things were going too well for me something bad was inevitably lurking in the shadows. My therapist had identified this as automatic negative thoughts or ANTS.
We have gone through so many changes this year. A rollercoaster of emotions and experiences ranging from good to bad and everything in between. And this has allowed me to view things in a different way. The bad can be just as temporary as the good. A happy day or experience could be lurking in the shadows and I take great comfort in that.
If I look back on this blog and the experiences I’ve written about there were times we were in a dark place and there are posts after that where we are enjoying a wonderful moment.
Today mom was supposed to start cycle 2 for this course but her platelets were too low. Two months ago this may have caused me to panic. We went through an entire month without her getting chemo and she survived. Her chemo kept working after that and her CA125 is now down to 23.
So today they decided to adjust her protocol once again so she is able to have quality. One week of a double of chemo and then two weeks off. So that’s the plan. At some point when her counts recover she will have two more chemos and then her scan. As for this week we continue to live our lives and enjoy the sunshine.