It’s time I let you know what’s going on.
It was almost three months ago that I was sitting at my desk at work when my cell phone rang. I didn’t recognize the number so I ignored it. Typical. About an hour later, I was sitting in a meeting and I get a text from my dad, “please call me. dad”.
You know that feeling when your gut tells you something’s wrong. I had that feeling. Something was definitely wrong.
I ran straight out of that conference room and called him, heart pounding straight out of my chest. Him and my mom had spent the weekend up on Orcas where they have a second home. He told me that mom wasn’t feeling well and put her on an earlier flight home.
Then in a broken voice, he said, “Your mom is in the hospital. She has a brain tumor & they need to operate ASAP”.
My legs collapsed and I fell to the floor right there in the walkway, sobbing. A co-worker came over and pulled me into a private area. She helped me track down my husband, packed up my bag and then grab my kiddo out of daycare. I thought I was going to either throw up or pass out. I think having to be a mom at that moment helped keep me from completely losing it.
I was the first to arrive at the hospital with my husband and son. My dad was waiting for his flight from Orcas and my sister jumping on the next flight out of San Francisco. After talking to the surgeon, we agreed it would be best to operate that night.
I tried not to cry around her. I knew I needed to be strong. With the tumor putting a lot pressure against her brain, she had a hard time remembering or fully grasping what was going on. In some way, that was a good thing.
There were lots of tears after we said our goodbyes, but still the optimism that everything was going to be just fine. When my sister showed up, we shared some good, healthy laughs and some good cries. Mason helped to lighten the mood a bit. It was after 10pm so everyone was pretty delirious, especially mace.
None of it felt real. It couldn’t be and not to my mom. She’s the rock of this family and so many other lives.
A little less than three hours, the surgeon came out. He gave my dad a big hug and said all went well, he had removed as much as the mass as possible and she was recovering in the ICU. A moment of relief before the anxiety kicked in of what was ahead. We thought the worst was over, but it had only begun.
My husband took Mason back home so they could get some sleep. My sister’s best friend followed them back to the house to pack a bag for my sister and I. We “slept” on the couches in the lobby of the ICU, while my dad slept on a pull out next to mom. I maybe slept an hour that night. It was cold and sounds of the machines kept my mind racing. Before my mom had gone into surgery, the nurse had her remove her wedding ring and bands. I reassured her that I’d hold onto them and give them right back when she was out. As I laid there on the couch that night with her wedding rings on my finger, I just kept praying (I don’t usually pray, but I started) that I would be giving these back to her.
It’s crazy. You have brain surgery and you’re out of the hospital in less than a week. You have any other surgery on a body part and you’re in for weeks/months.
Leaving some of the details out to respect the privacy of my family and my mother’s dignity.
Since then, we’ve had some ups and lots of downs. We try and stay focused on the facts and then just pray for a miracle, which is exactly what we need.
Here’s the main facts: The surgical pathology report confirmed the tumor is a high grade Glioblastoma multiforme, grade IV. There continues to be a lot of swelling which is what affects her speech, awareness and strength/mobility.
She’s already completed radiation (every single day for 6 1/2 weeks), which was worse than chemo. She still has another 6 months of chemotherapy. At the end of the month, we’ll know what’s going on in her brain. Her doctors are incredible. We all go to every one of her appointments together. When there’s gaps between appointments or if we’re there early, we pick up three tall soy lattes from the Starbucks across the street. My mom lights up every time we place the cup in her hand. I’ve never been more proud to work for a company that brings such joy to my family.
My husband, son, sister (she’s moved back in indefinitely) and I all live here with my mom and dad to help with 24/7 care. It’s been challenging, but wonderful all at the same time. The challenge for my family – we no longer have our own space, routine or some days, relationship. My sister is challenged with the decision to leave her life, career and friends in San Francisco to move home to be with mom. My dad is still on a leave from work and will need to decide what he’ll do after the first of the year. However, we’ve created such beautiful memories that we’ll forever cherish. We’ve come together as a family to give my mom the best possible support that she needs and right now, it’s about mom.
My mom will not see anyone, not even the house cleaners. She’s okay with strangers or therapist that come to the house. Thank goodness. There are definitely people that are angry with (and what feels like hate) us. It’s all about mom and until she’s ready, we have to be the bad guys.
Mason has been an absolute gift to this family. Him and my mom have such a beautiful relationship and to see the bond right now, it brings tears to my eyes. My mom had an astrology reading right before his birth and the woman told her that Mason would be a healer. And that he is.
My work has been outstanding. They’ve allowed me to work part time from home, focusing on what I love – photography and the creative side of the business. It’s amazing. In such a short time, I feel like I’m apart of their family.
The past three months I’ve had a taste of what it’s like to walk in my mom’s shoes and boy does it take a special person. She did most of the cooking and now I’ve taken on that role. It personally fills my heart to be able to feed my family healthy and nutritious food. As for everything else, she did it all. And I say that without exaggeration. Just trying to keep up with their bills, finances, her business & clients, house maintenance, finding and canceling trip itineraries, everything that comes with owning a second home. If there was a problem with the heat, she had it fixed in a blink of an eye. She did it all with such class and never a complaint.
Let me tell you though, it’s fucking exhausting.
Sure, aside from the daily care for her I also have a one year old trying to stick his finger in power sockets that somehow lost the safety plug, then keeping my husband happy (living at his in-laws) and do all this without getting fired. So, if you’re still waiting for an email, text or phone call from me – I’m a little behind.
The things I’ve witnessed and experienced have been more than I ever imagined at this stage in my life. I don’t have words to describe the situation, nor do I really think you want to know. Truthfully, I’m not cut out to be a caregiver, but it’s amazing what you do for your family when you’re put in this situation. You have to stay strong in the moment and before you’re about to fall, you grab onto Hope and hold on for dear life. I know there’s a light at the end of the tunnel, but this road feels forever long and I just can’t see it (yet).
I miss my mom.
I just want to have a conversation and talk about life like we use to. I want to go shopping, cook, and travel together. I’m so thankful that she’s shared a good portion of her recipes with me. Now that I cook for her and the family, there’s nothing like mom’s food to give us comfort.
I find most of my
breakdowns healthy cries happen in the car when I’m alone. I prefer to bake or blog instead of sleep. I find comfort in coffee instead of food. I owe a lot if not all my sanity to our INCREDIBLE community. People drop off food a few times a week, help with Mason when he’s not in daycare (or sick and kicked out of daycare), write letters, send gifts and flowers and continually send their love and prayers. She’s touched so many people’s lives that the amount of cards and letters take up 4 gallon sized plastic bags. You never know how big your community is until you need them.
The only thing, looking back is that I wish I took more pictures with or of her. I wish I didn’t fight all those family photos she had asked for. Those are the main regrets. Everything else, I’m truly blessed. We’ve had some of the greatest life experiences and pray to god, we have many more. If you’re reading this, please take photos with the ones you love, even if you’re critical of how you look. Live and enjoy life with them.
This is a lot, I know. I don’t want you to feel sorry for me or my family. That’s not why I’m writing this. My one request, it’s that you join us in our stand – We’re standing for Linda’s health and well being and for the best possible outcome, but specifically we’re standing for full recovery from surgery and complete eradication of cancer with her current treatment.
We will revise our stand when things change or when/if we learn new information.
Before you comment, please be careful with what you share/comment. It’s really hard for me to hear about others who have passed from this type of cancer. We don’t need money, but we’ll take prayers or good energy. This is something very personal and just ask that you respect my space. I’m sharing this here because it’s my personal blog where I can be honest and transparent. I love and appreciate this community more I can express. Thank you for the support and understanding while my family and I go through this (at many times) painful journey.
December 11 2013