- 2 weeks ago
Hi Bees. I’ve been a lurker since my engagement in 2017 (wed 2018). I’m incredibly shy so I’ve never posted and am so grateful for how this community has been a resource for me over the past few years. Today I’m struggling and I don’t know where to go. I also don’t know what I’m looking for really, since I can’t actually do anything to fix this.
My mom has been diagnosed with a rare cancer. So far we have only received the initial biopsy pathology notes and I am doing my best to coordinate and prepare us for next steps. Right now we are waiting to see a medical oncologist (though not specializing in this type of cancer) in July. Assuming the tumor is operable, it will be a complicated surgery. Based on my research: it seems this diagnosis accounts for less than 1 out of every 500 new cases of cancer diagnosed each year. It looks like 5 year survival rate is in the 80s, and drops down to 40% for 15 years.
I am devastated. I don’t even know if that’s a strong enough word. I said I was shy; I am not exaggerating when I say my mom is my best friend. She did everything she could to give us (me + 1 sibling, currently 1000s miles away) the world and as I’ve gotten older I’m realizing just how difficult this was for her, given the cards she had been dealt. On the whole things have not been easy for her. She raised me as a single mother and never remarried. I’m now in my twenties and she in her fifties.
My mother is an incredibly strong person, however it will be a challenge for her to navigate these conversations and what’s ahead. I’m trying so hard to compartmentalize and view this through some project management lens, but I can’t help breaking down. I haven’t been able to see her yet since I am quarantining first, and she’s not able to video chat (tech issues). I expect to visit this week and in the meantime I’m a wreck. My eating/hydrating/sleeping is completely messed up.
I have spent hours researching the disease, researching surgery in general + and in relation to her situation, attempting to get consults at nearby facilities with potential doctors with experience (limited due to rarity), and coping/coming up with a plan for the likely-significant financial impact (sidebar: US healthcare model is dreadful).
In whatever moments I am not actively trying to figure everything out, I weep – in spurts and uncontrollably. It feels like grieving. So I try to focus on the present. Then I remember COVID. And I realize that’s an additional layer of complexity. I can’t fix that either. I feel helpless. I feel like I should be doing more but I don’t know what to do or how to do it.
My husband has been right there with me through the research and coordination, but I feel I need to protect him from the incredible amount of emotions I’m feeling. We have our moments and we try to turn it into positivity and action. He is a sensitive guy and I love this about him. I don’t want to belittle his efforts by continuing to feel so helpless and thinking we really need to go into this eyes wide open. This is going to be a rough patch for sure. We expect my mother to move in with us during treatment, and that’s another thing we need to figure out.
I know this is not a cancer support forum and I should find one. Right now this is the only forum I frequent (as a lurker) and I also realize I need to care for myself, my husband, and my marriage during this time. I want so badly to ask: How do I fix this, everything? There’s no answer there. So, maybe: How are we (mom; me/mom;me/sibling;me/grandma;me/aunts;me/spouse;so on) going to get through this? How can I best support us all? What else can I do? Any advice or support is appreciated.