Chemo Week 1 Update--A Letter To My Family (That Did Not Go Over Well AT ALL)

 Hey Y'all,

It's been a week plus a day since I was diagnosed, and a week today since I started chemo, so I thought I'd write a bit of an update...

What a week it's been... Every day I wake up. I wake up and am so grateful to be alive. And then I remember the new reason behind that gratitude--It's because I have cancer. I am grateful to wake up another day because I have cancer. And then I remember that every day for the rest of my life, I will wake up and remember that I have cancer. There will never be another day in my life that I won't wake up and not think: Morning. What a sunny, gorgeous day! I'm so glad I woke up today. And wait, oh that's right, I have cancer. Shit fuck... And that's not say to say that I'm not so incredibly happy that I'm still waking up every day to see my husband asleep beside me (or more likely already awake); to hear Abbie leaving for work before the sun rises to make coffee for those early risers; to know that Nate's turning in his last papers of the semester and going to sleep as Abbie heads out the door; and to wonder how late Noah might sleep this morning, as he slowly moves into his preteen years. I will never take a morning like that for granted again. And, at the same time, I will still wake up to remember that I have cancer, and that fucking sucks. 

The first week on chemo fucking blew. Literally. I was sick to my stomach. I was dizzy every morning. I had diarrhea. I vomited. Apparently I looked shockingly awful, right, Ra.  (I LOVE YOU!) Two of my best friends were in town for a day and a half, and I couldn't see either of them because I was so stuck to the toilet that I couldn't leave the house. I cried. I cried and cried and cried. We told the kids about it. I spent every single fucking day telling a different friend about it. I cried more and then some more and then some more again. As the days moved by, after I spoke with my therapist, after Alan and I spoke with our therapist, we realized that this is a big fucking deal. This is cancer and chemo, not just a platelet disorder and another daily pill.

I have to get my blood drawn weekly for 12 weeks straight to start things off. No big deal, I thought. My first blood draw was yesterday. And then the results came back. My platelets increased dramatically to the highest level they've ever been, instead of dropping like we'd hoped they would with the chemo. THAT WAS WHEN I REALIZED WHAT I WAS REALLY UP AGAINST: I almost saw it all flash before my eyes, movie-style fashion: My life reduced to a series of blood draws, the time it takes to get the results back, and then what happens once the results are in... Is it good news? Is it bad news? Do we need to up the chemo dose, and if so, FUCK. Do we need to lower the chemo dose, and if so, also FUCK, because that means I'm either anemic or immunosuppressed. Maybe the dose is just good and working right--That's what I hope for. But these lab results, that I'm going to have to wait for and receive, regularly, for the rest of my life, will tell me so many things. And I'm going to have to spend every day, week, month, whatever, waiting on the results of these lab results. They'll tell me whether I'm the one who ended up with the bad luck, the one whose blood betrayed them, whose Essential Thrombycythemia converted to Myelofibrosis, or ultimately, AML. These lab results will ultimately be the thing that will tell me when I'm going to live and when it's finally my turn to die. I do realize that this is looking a long way down the barrel. It's a barrel I've been forced to look down, however, for the first time this week.

So, this last week has been a pretty fucking steep learning curve. Cancer isn't always about the physical symptoms I've learned. Yes, for most people it obviously makes sense that that's a huge part of what makes cancer so awful. For me, though, and I now understand that this is true for most everybody with cancer, a lot of this is about coping with the thoughts that come with having cancer. I think that Alan shared the greatest perspective on all of that this week in a way that only he could, as someone who has also had blood cancer, but a very, very different kind. I'll share with you all what he shared with me. When Alan had Acute Myelogenous Leukemia in high school, he told me that he remembers feeling so grateful that he had one of the worst kinds of cancer so that he had to be treated fast and really, ultimately cured, because the thought of having to live with cancer was just unthinkable to him. He was glad things were the way they were because he couldn't imagine the other side. And now here we are on the other side, living together with cancer for the rest of my life. And he's right; it's fucking hard. It fucking blows. But with those words, he took away all of the shame and guilt I had for feeling the way I was about "getting to live with cancer for the rest of my life." Because while it is a gift, it's also a curse. And while I'll never look another day away, I will also not feel ashamed for longing to wake up to a colorful sunrise over a white sand beach somewhere warm and far away, without my brain slowly remembering to remind me to take me chemo because I have cancer, and then to worry about my platelet count, etc. 

I thought this diagnosis wasn't going to change my life much. Holy fuck has it. WIth that, I sincerely hope y'all are doing as best you can with what life hands you and enjoying the holidays, whichever you celebrate. I'd say cherish these days, but I know that we're all trying and that advice like that just comes off as condescending lol. Wishing I could pop in to give you each a hug and a kiss on the cheek. Much love to each of you.

Love,

Em

ETA: So, yeah, this letter didn't go over well. I will say that I very consciously wrote it with no expectations. With that said, surprisingly, my mom was the only one who responded. Here's her email response:

Oh Em. This is hard for a mom to read. I hope that each day gets a little easier. I love you. 

Love,

Mom

I am grateful that she responded. (Also, it's fucking hard for a mom to write.) I am choosing not judgement here, however, and acknowledging that it would be very difficult to read this as a mom whose child is suffering. I don't want to imagine that. I'm grateful for her wish that each day gets easier. And it's really so good to hear, "I love you," during times like this past week and a half. The reason I wrote the email in the first place was because I told my family about my cancer diagnosis on Wednesday the 14th, the day I was diagnosed, and I did not hear a single word from them after that. No check-ins. No, "How are you?" No, "I just wanted to let you know that I'm thinking of you and I love you." Nothing. Zip. Zero. Nada.

On this day that I wrote the email, this Thursday, one week out from my chemo start date, however, Rachel FaceTimed me because she thought I was out playing with Mabel in the snow. When she saw my face, she was pretty fucking startled. 🤷 Never one not to speak her thoughts (she told me I looked sick at my wedding because I was too skinny 🙄), upon seeing me on FaceTime, she said, "Oh my god, you look terrible! Jesus, you look really awful! You look like you've been crying and you're so skinny." Or something along those lines... I said, "Fuck you. That's so fucking rude. You can't just say that to someone. Jesus, Ra. Fuck you." Startled, she apologized profusely. I explained that I'd been putting POISON into my body for an entire week, been dizzy every morning, having diarrhea, nausea, and vomiting for that entire week. I'd been crying more during each day than I hadn't been crying for eight days. Basically I explained what I wrote in the letter above. I guess it all showed in my face. I didn't see it. I asked Alan about it. He was quite dodgy about it, so I'm guessing that I really do look worse that I think I do. I GUESS THAT'S WHAT CANCER AND CHEMO WILL DO TO YOU. To me. I guess that's what cancer and chemo has done to me--Bags under my eyes that look like bruises. Paleness. No color in my lips. And yes, weight loss, enough that's apparent in my face even after even just a week. (This is still what I see:)

After seeing me and talking with me on FaceTime, Ra texted our mom and dad. From what she told me, it sounds like she told them that I was having a really hard time and that they all, herself included, needed to take this cancer diagnosis way more seriously. My mom FaceTimed me with Jamie right after Ra texted them, but I missed it for some reason that I can't remember now. She's reached out several times now and I'm very grateful for that. Liz texted yesterday, Christmas, to say that she's been really struggling with single momming and work, and so she's sorry for not responding to my messages or anything. From what I've heard from Ra, she having a hard time. I've learned not to compare challenges, so I'm just trying to support her however I can. She did send a couple of articles that had to do with a specific type of mushroom helping your immune system fight cancer. Doesn't look like it would help me or my cancer, but the intent was kind, so I appreciate that. I hope that she can keep her head above water and see that she has so much support. SCREW the problem, a DBT skill comes to mind, especially the C, change your relationship to the problem might really help her. I wish I could help her. Big siiiiiiiigh.

And then there's my dad. My hero. The one I thought I could always count on. Until I couldn't. Until I realized, with the support of my therapist, that he was a part of the family system that shut me out. I'm still working through all of that; I've definitely not accepted it all yet. I still hope, wish, dream that he'll reach out to me, stand up for me. Be my hero. And here we are, the day after Christmas, days after I sent this email, days after I've texted the Family Group Text... And, NOTHING. No email response. No liked pictures. No text replies. It's like I've disappeared. Or there's definitely a high likelihood that I'm getting the Silent Treatment. I am reminding myself that I sent the email with no expectations, so it's okay that he didn't respond to that. Am I surprised? Yes, a bit. I won't let myself feel disappointment, though, as that can only come from expectation. I am allowed to feel disappointed that it's now been 13 days since I was diagnosed and I haven't heard a SINGLE FUCKING WORD FROM MY DAD. Absolutely no points of contact. ZERO. That's been so incredibly hard on my heart. And confusing for my head. I mean maybe I'm too goddamn selfish for him to want to talk to me? His baby sister died a horrible death from cancer January 16th of this year, yeah January 16th 2022 of Uterine cancer. I keep thinking that maybe he's thinking, "What Lauri wouldn't have given to 'live with cancer every day for the rest of her life instead of dying from it.' How selfish is Emily for feeling sorry for herself for having to wake up with cancer every day for the rest of her life." That's valid. I can't deny anyone their feelings because feelings, by virtue of feeling them, are valid. AND, it still absolutely fucking sucks to not hear a single word from my dad for 13 days after being diagnosed with cancer and sharing that diagnosis with him, and then after sharing the intimate details of what that first week was like, physically, yes, but then emotionally, especially... I don't even know how to feel. I just feel betrayed. Yes, BETRAYED covers it well. I want to say heartbroken, but I think that my boundaries were put in place last year to prevent the heartbreak. I guess the issue is that I'm pretty freaking fragile right now, hence my boundaries are a bit up and down. So... the heartbreak, well it has been an issue. I've spent hours crying about my dad's lack of a reaction, crying wishing that he's just say, "Hey Em, just wondering how you're doing. Love you." That's too much to ask for, I'm slowly learning. 

This is a pretty fucking steep learning curve, too. I am beyond grateful to have Alan by my side. Yes, we are having our difficulties. Yes, this crisis has brought us together, and I'm so grateful that it has done so. Alan's really been there for me during the hard times. And... We still have to a lot of growing to do. I'm truly hoping that we'll be able to do it side by side now... Fingers crossed.

I miss you, Dad.