Explaining It To Julian

Today my husband and I were talking about someone visiting a doctor and Julian’s first question was “why what’s wrong?” We explained that just like he goes on annual checkups other people do too. 

I have been very careful throughout the past 7 months to explain things to him and try to make sure he doesn’t get scared or worried. Early on I made the choice to tell him his Mimi has cancer and I am glad I did. A few months after mom’s diagnosis my husband came home from work and had a terrible headache. The next day it still hadn’t gone away so I took Julian to school that day. As I was loading him into the car he asked “Is daddy sick like Mimi?”  And reassured him no, that daddy has a headache and he would be fine when he got home from work. 

As my mom’s hair began to grow back between surgery and her next course of chemo we were sitting in the basement and she wanted to take her scarf off but didn’t want to scare Julian. I told her to go for it and he would probably ask questions and then move on. So she removed it and he said “Mimi you have a hair cut like me” and asked why. We explained it was because of the cancer and it would grow. 

For mom’s birthday she wore her wig out to dinner so I prepped Julian on the way there. He’s obsessed with superheroes and dressing up. So I explained just like he wears a Captain America mask, Mimi would be wearing Wonder Woman hair to dinner. 

He knows that if he’s sick he can’t hug her. Or if we are too sick we can’t visit. He will ask to go there after school and if I say no he will follow up with “oh Mimi not feel good”. 

He makes remarks like “Mimi has a little bit of cancer”. He is sweet (sometimes sour) but he is our light in all of this. And I am so proud of him. 

Super Grateful But…

We have been blessed. We have been given so many miracles and gifts over the past 7 months. Tumors shrinking…miracle. Surgery…miracle. Still responding to chemo…miracle. And the holidays. The holidays would give Hallmark a run for their money. So it feels a bit ungrateful to say the other thing we are feeling…exhausted. It has been a long draining 7 months and we aren’t the ones that had to physically do a thing. We were just witnesses to the pain endured by someone we love very much. So while I am incredibly grateful it would be a lie if I said knowing the cancer was still there wasn’t a huge disappointment. It wasn’t surprising just a disappointment and requires us to adjust the game plan and just move forward. 

**But I would also like to say (I’m sure I’ll devote a post about this in the future) that we are beyond grateful for the friends and family that have prayed for us, thought about us, and let us know they care. It has meant so much to us and we are constantly talking about the love we have been shown over these past 7 months**

Where We’re At

Mom has two small spots of cancer.  We aren’t sure where they are specifically but we know where they are NOT.  They are NOT in her chest because her chest CT scan was clear.  So the spots are either in her abdomen or pelvis.  I mean at this point location doesn’t really matter to an extent.  It’s more about what do they do to get rid of them.  They have decided to switch up her chemo drug to one that’s a bit less toxic.  This should help with the neuropathy.  So no chemo this week and she will start the course with the new drug next week. So that’s just kind of where we are at.

Still Standing

No judgement, letting go & intention those have been the three different focuses of the yoga classes I have gone to the past 3 weeks.  And as we start the class and the instructor begins to discuss what the “theme” of the class will be for the day I have thought every time wow that’s exactly what I needed.

At the end of class today the instructor thanked me for being there (I’ve been the only one to show up the past two weeks). I thanked her for doing these classes and that I really needed it. She began speaking about the stresses of my generation and she said something about how she never imagined she would be sitting here teaching yoga.  That struck a chord.  Not because I never imagined I would be doing yoga.  I’ve always had an interest but I think I really liked the idea of being someone that does yoga and not actually putting in the work.  But it struck a chord more on a life level.  I know it has to do with the fact that my mom has cancer but I don’t know if it’s more I can’t believe she has it or I can’t believe we’ve made it this far.  Hard to tell.  All I know is I started to open up to her.

I revealed my mom had been diagnosed with ovarian cancer in June and the journey of her chemo and the not knowing if she could have surgery and the more chemo and the genetic testing and her previous breast cancer. She began to tear up a bit as I recounted the events of the past almost 7 months.  I told her the yoga was really helping me just clear my head and I was thankful for the class.  As I was leaving she told me see you next week and blessings to your mother. I feel a calmness I haven’t felt all week. Part of it was probably the yoga but I think the other part is when I was telling her everything that has happened I realized we are still standing.  So whatever these scans say and whatever happens next we will make it through because we’ve made it this far.

 

A Whirlwind Of Emotions

Well none of us saw that coming. That’s right folks, mom has her first (since 2 days before surgery) CT scan tomorrow. It was a series of very strange events that led us to this and it went a little something like this. 

I woke up and went to work this morning. At around 10:30 I headed to mom’s gynecological oncologist appointment. I decided I would go because honestly it is the worst just sitting around waiting for a text message or phone call where she relays what he said. So I get to the hospital and can’t find a parking spot and at this point I’m almost running late. So I get there and dad is waiting for me because they already took her back. 

The three of us are just sitting in the room chatting. And I pull out my notebook. Mom refers to it as my “death notebook” because I have all my notes from diagnosis til now. Numbers, stats, genetic counseling appointment notes, post surgery notes and her wishes. It’s my small sense of control in an uncontrollable situation. The nurse comes in and asks some questions about how mom’s feeling. Mom lets her know the different chemo side effects she’s experiencing and the nurse steps out. 

A few minutes later the doctor comes in with the nurse as well as the woman that does the scheduling. He tells her that it’s good her CA125 is coming down but it’s still not normal. He is concerned about her white blood cell count and her neuropathy. He rattles off different treatment options going forward. They have a conversation and he tells us in 3 weeks he will have her get a CT scan. 

Mom, dad and I head up to the chemo pod because mom is supposed to start cycle 7 which is double dose. We get my favorite chemo nurse again and they do the blood draw. Her numbers come back and it turns out platelets were pretty low so they put in a call with the doctor to see how he wants to proceed and our favorite nurse hands the phone over to mom. She’s speaking to the scheduling woman and finds out two things. One they don’t want her to get chemo today because of the low platelets. And two he now wants her to have her scan done by Monday so he can look at it before chemo on Tuesday. So ya tomorrow mom will have a CT scan and within the next week we will know what everything looks like.  So nothing went quite how we expected but we should know by now to expect the unexpected. 

Reunited

There are certain people in our lives that you don’t have to see everyday but when you get together it’s like no time has passed. One person that comes to mind is my friend Katy. Today I saw her for the first time in quite a while (she lives in Florida). More specifically the last time I saw her was two weeks after my mom’s diagnosis. This is going to sound awful but it is honest. When she left my parents house that day in July I thought to myself the next time I see her will be because my mom is dead. That may sound dark but that was a dark time. Filled with a lot of uncertainty. I mean it’s still uncertain but I think I’m just learning to cope better. 

But our reuniting today was for a happy reason. She is pregnant and we were celebrating at her baby shower. Mom couldn’t go because her WBC is low and she shouldn’t be around a large group of people. But after the shower Katy, her mom, Amanda (another childhood friend) & her mom all stopped by my parents house. We have all known each other for 25 years and it was just so awesome to sit in a room together and talk. All of us talking so loudly, excited to share random stories. It’s a memory I will hold fondly in my heart, just sharing moments with people you have known practically your whole life. 

Girls Day

My sister texted me at 5:53am that school was closed (she’s a teacher) and that she could take mom to chemo if I needed to go to work. So the three of us went to chemo together. I thought ohhh this would be a cute little blog. Girls day I would call it. Filled with banter and jokes and mom telling us to behave because we were in public. Sometimes we get out of hand when we are together. We made the nurses laugh as the three of us interacted with one another. It’s the kind of thing family sitcoms are made of. And then it became a different kind of day. 

As we were leaving the laughter had stopped and the reality of cancer and chemo became apparent. Mom told the nurse about the neuropathy in her legs. Chemo can cause neuropathy aka nerve damage. The nurse looked at the schedule and saw that the amount of time mom would be receiving chemo had increased significantly for one of the drugs. The nurse explained that after 6 cycles (18 weeks) they become concerned about patients becoming platinum resistant so they administer it in a different way to hope to avoid that. So it’s just this obnoxious double edge sword where you need the chemo to kill the cancer but at what cost. And it just feels like one of those days where you feel ughhhh cancer sucks.