Fast facts (if you don’t have time to read the full post): Today I had a meeting with a genetic counselor. I will be tested for 47 different cancer causing genes including BCRA1 and 2, which so happen to run in my family. I also had an impromptu meeting with a fertility preservation clinic in Seattle over the phone and scheduled my first appointment with my oncology team for tomorrow at 4 pm. MRI results have come back, but I could not get into my account to see the results, so I am guessing I will learn more tomorrow. 40-50% of MRI results come back with results that will end with more ultrasounds and biopsies to make sure the doctors are not overlooking any spots of concern that could be treated.

TO THE LONG VERSION!

This post might have 56% less sarcasm today than previous posts. I had a really really hard day. So fucking hard. On top of what is happening in world in Ukraine and the fucking transphobic shit in Texas, this day felt like an emotional hell. I am not ready to write about the hard parts of my day in this post since I am still processing them and it has to do with my fertility preservation meeting, so hopefully in another post I might be able to talk about it. For now, let’s talk GENES! Time to recall your short time in biology 101. Woo!

I cannot stress the value of asking your family about their medical histories. If you need to stop now so you can go have this important conversation with your loved ones, I can wait. Ask about history of cancers and other diseases. When was someone diagnosed? Has anyone had any genetic testing done? I will be right here until you get back. 🙂

Today I want to specifically discuss BRCA genes because that is what is impacting my journey with cancer the most. I am on a HUGE learning curve with this, so I am heavily relying on this awesome site that I am going to redirect you to learn really fast what BRCA genes are and what it means to have a mutation and then I can tell you how this is playing into all of this. You can click on this informational bit here. Don’t worry, I will still wait for your return once more. This link is a must read, otherwise what I might say next may not make sense.

Several family members on my father’s side have tested positive for either BRCA1 or BRCA2 genes. Many have been diagnosed with cancer. Because I want to be sensitive to my family members, I am not going to say who but just the type of cancers these family members have had or are currently battling: prostate, breast, and ovarian. And here is me, diagnosed at 29 with breast cancer. I am the youngest in my family with a cancer diagnosis. My counselor said she is not a betting woman, but she is willing to bet that I will test positive for carrying the BRCA1 mutation. She would be VERY surprised for my results to come back otherwise given my current diagnosis.

In total, I will be tested for 47 different cancer-causing genes! Although we are particularly focused on the BRCA outcomes, the others can be helpful down the road. A positive diagnosis for me can help inform my treatment on a deeper level. If you made it to the part about PARP inhibitors, congratulations because that is the most interesting part, or at least to me. (And you probably saw the second paragraph about triple negative cancers, and I told you not to click on it so I hope you didn’t because that isn’t my problem anymore! Don’t torture yourself unless you’re feeling okay mentally haha.) The PARP inhibitors could be another tool in my treatment if I am BRCA positive. PARP helps repair DNA when it becomes damaged, but when it comes to these mutated genes and cancer, PARP inhibitors can prevent these cancer genes from repairing their damaged DNA, ultimately making them die.

Like I mentioned, some of my family members have completed their genetic testing and one reached out to me and faxed their information to my counselor for today’s meeting. We were able to discuss it and I learned that the particular BRCA1 gene mutation that is appearing in my family has something called a deletion and is missing three letters in the gene. It is important to note that not all mutations are high risk; some appear to be harmless variations. “The cancer risk associated with any given mutation varies significantly and depends on the exact type and location of the mutation and possibly other individual factors,” according to this Wikipedia article. Unfortunately in case of our family, ours is a high risk mutation.

So this brings me back to my first request. Do you know your family’s medical history? Can you be that catalyst to start the conversation and be a pioneer in getting tested? I know that is scary and sometimes not fun to think about, especially when you’re young. I wish I had thought of it sooner. It might have steered me away from this journey with cancer. But what I know now is what I want to use to help YOU. Ask your primary doctor what steps need to be taken to get a referral for genetic testing. Because I got to genetic counseling through this experience with cancer, you getting there might be different than how I got here so consult with your doctor. If you have someone in your family who has tested positive for BRCA1 or 2, this makes the process a lot easier. I learned that with my test, my sister can get tested for free up to five months after I get my results. That test result could give her critical information to be proactive about her health. Technology is amazing.

Oh and you may be wondering about the test itself! Super easy. Just massive swab you rub in your cheeks ten times on each side. Easiest test I have had so far. I should get my results in about 3 to 4 weeks.

If you have done 23&Me, that is a great resource to learn about your ancestry and some other interesting and informative facts. However, please read the full explanation of carrier and variant reports. I misread the report about the BRCA genes and currently the “test includes three genetic variants in the BRCA1 and BRCA2 genes that are most common in people of Ashkenazi Jewish decent.” If you are not of Ashkenazi Jewish decent, this test is pretty useless to you. I work at a library and you’d think I would be a good reader, but I missed that very important detail and this whole time thought I did NOT have the BRCA genes. Reality is about to check me the fuck up. Don’t be like me and read. Lol.

Today was a long day and my emotions hurt. My heart aches. But I did learn a lot. I hope you did, too!

Today’s song lyric of the day is brought to you by Daft Punk!

“I’ll just keep playing back
These fragments of time
Everywhere I go, this moment’ll shine”

– Fragments of Time, Daft Punk

Fast facts (if you don’t have time to read the full post): I had an MRI today with and without contrast, I have genetic counseling tomorrow to test my DNA for lots of genes, and I have an official diagnosis: invasive lobular carcinoma stage 2 or stage 3a if they are using the new standards for diagnosing stages. I DO NOT have triple negative anymore! (Don’t Google my old diagnosis. You may cry.) I also should be meeting my oncology team on Friday to learn more about my treatment.

TO THE LONG VERSION!

Madison: 1 Needles: 1

I would like to start a petition for a Lady Gaga channel for MRI’s. This morning during my shower, I was like okay IV’s suck but you know what? I get 22 minutes of uninterrupted Lady Gaga time during my MRI! Fuck yeah! But no. You get to select a channel of music type or genre. I was debating between top hits and the EDM channel and ultimately chose the EDM channel because what if too many sad top hits came on?

I regret not choosing the top hits. I hate EDM music that is too mainstream at this point or just… not enough bass. If I am not headbanging, my heart not racing, or my car not vibrating, I will just put on Adele.

Oooh an Adele channel would be great, too.

The MRI machine was SO loud. It reminded me of waking up behind a couch when I was like 19 after a party in someone’s apartment and I am hungover and someone’s alarm is going off and they are so passed out they don’t hear it. Someone turn off the damn alarm!

I regret that I misled my readers into thinking I would be the Madonna of MRI’s when in fact no cones were placed on my breasts today. We can blame my doctor for giving me a weird description that was not accurate haha. My MRI involved me laying on my stomach, similar in style to a massage table except your breasts are in gaps that make them free fall. But before I got on the table, I had to face my first needle. It sucked. As predicted, this would be the worst part of my day. My left arm could not produce what we needed, so I just started bleeding all over. They called for another nurse to come in and we had success with my right arm, but damn I fucking hated it. My nurses humored me as I chatted about dumb things to distract myself. My anxiety meds kicked in but I was not nearly out of it as I thought I would be. I felt like a normal human without anxiety at that point, yet my needle phobia still remained. Eff.

Crossing that hurdle was none the less satisfying. I did something hard today and I was okay! Yay! And then my doctor called to inform me of my updated diagnosis: invasive lobular carcinoma in stage 2 or stage 3a. At this point, I don’t know a ton other than my tumor does have estrogen receptors, and this diagnosis is more treatable. I will be meeting with my oncology team on Friday and I should have a clearer picture of treatment. I do know that this journey I am entering will be roughly a year long and will include chemotherapy, double mastectomy, radiation, and reconstruction surgery. I am trying not to be sad that this journey will be long, but I can’t help it. Which brings me to something really personal I wanted to share and I want to offer a trigger warning for folks who are sensitive to cancer and topics surrounding mental health and death.

Ready? Okay. Deep breaths.

When you say the word “scary” or “fear” or even “terrifying” what comes to your mind? There are no wrong answers and those answers vary from person to person, the season in your life, even context varies the response. Language at times can feel so casual. A single word can be the color for so many things. I’ve been struggling that these words in particular (scary, fear, terrifying) don’t fully encompass the depth of what I feel. They are just words. What I am feeling is incredibly dark. “Scary” went from thinking about scary movies to thinking about my own body creating cells that can kill me. My fears evolved into something unimaginable. I don’t feel like there is a word to fit what I am experiencing to fully explain to someone else.

Yesterday after my initial diagnosis, it was really hard not to feel like I would die. That this cancer, these tumors, could kill me. If you researched my initial diagnosis, it was a dark one. I want to be positive, I want to manifest that I will kick cancer to the curb no matter my diagnosis, but I want to be honest and say that thought was in my brain. I told my friend at work and cried. I don’t want to carry that feeling with me. And I am BLESSED BEYOND BELIEF that my diagnosis has changed and that feeling is just a beetle rummaging about that I encounter sometimes in thoughts now. My fear has lessened, but cancer is scary. I fully get it now. I wish I didn’t.

I have been in therapy on and off for about nine years now. I have general anxiety and a depressive disorder. I’ve been able to manage these with therapy and some awesome coping skills, and right now I am pretty healthy mentally. But I worry. I will continue therapy and I will ask for what I need when I feel the dark cloud setting in. I am no stranger to these clouds. But I don’t want these clouds to turn into disasters on top of my need to win this larger war.

Cancer is a dark experience. It can feel isolating. It wants to take from me all the things I love. And I am just simply not interested in that transaction. No deal. Not today, not tomorrow, not a year from now.

Okay that was a lot. I don’t want to end this post with something really emo that might keep you up at night so let’s end it with my song lyric of the day!

Today’s song lyric of course is brought to you by Lady Gaga because obio.

“I’m a bad kid and I will survive
One of the bad kids
Don’t know wrong from right”

– Bad Kids, Lady Gaga

Tuesday, February 22 at 5:45 pm: “What is the one question you wish someone was asking you right now that they aren’t?” my friend asked me over the phone as I waited in line at Rite Aid to pick up a prescription. I still don’t know the question to that but it is a question I can’t stop thinking about. I am surrounded by questions and unknowns. Michael Scott once said, “I know nothing.” Same.

Rewind to approximately 10:15 am: I met with my lead doctor for my case. It reminded me of the day before an exam in college where your professor is like, “Let’s review everything you have learned for your final exam!” and your head explodes and you wonder how someone thinks so much knowledge could be filled into your brain.

My initial diagnosis was presented in the calmest way possible and explained so well. I was initially told I have a triple negative tumor, a type of breast cancer that affects 15% of patients. For the sake of this journal update, I am not going to explain that and you can Google it if you want because 1) my diagnosis is shifting and 2) it is scary and I don’t want to scare myself. But the conversation was great and I asked all the questions and got a grip on my new reality. I really like my doctor, despite the fact he attended UW. I will probably let this one slide since they have an excellent medical school but his Huskies lanyard was really an eye sore for me. *cackles*

I left with new appointments to make including one with a genetic counselor which I meet with tomorrow to test for BRCA genes, among other things, and my new impending doom of my MRI this morning. I cannot express how much I HATE NEEDLES. They give me anxiety to the stars. And as I type, I am literally two hours away from being stuck with my first cancer journey needle. I hate it. I got a prescription for some anxiety meds and I really hope that will help me conquer my fears.

A missed call at 5:32 pm: I think it is really cool that you get assigned a breast health nurse navigator to help you with all the things. I missed a call from her because my phone said it was spam and I was on the phone with my friend at the Rite Aid. (Needless to say her number is now saved in my phone.) She left a voicemail and I wished I had picked up the phone. As my sister cleaned my cat box, joking about being a “mighty excavator of the kitty poos” I clicked on my voicemail and learned my pathology revealed that I was NOT triple negative and in fact had some estrogen receptors on my tumors! I know I didn’t go into a lot of detail about what this all means, so I promise in a post later after I check in with my doctor I will have more to say about my diagnosis. For now, it is a ray of light in my doom cloud.

Wednesday, February 23 at 6:40 am: I am wrapping up my daily post with anxiety clutching my soul for my 8:30 am MRI appointment. I heard my breasts will go into cones and I wish that could be photographed because I am sure I will look like the Madonna of MRI’s. I anticipate if I feel up for it this afternoon, I might have a bonus post for the day to share about my experience, maybe updates on my diagnosis, and the most requested piece of information about what I can eat right now with parosmia. Because not only do I have fucking cancer I am still a fucking long hauler with a limited diet and I really can never do life on easy mode, can I?

I don’t watch a lot of movies. I hate sitting for long periods of time. I joke that I am terrible at relaxing, which is less of a joke and more of my truth. I would just rather be doing something productive. Of course productivity is tied with capitalism and social pressures as a woman to constantly show my value, but I think that at my core I just like to be busy. I’ve got goals and they only get done if I am busy, or so I tell myself. 

Yesterday I experienced a moment out of a movie. I sat in my little car, tears coming down just as fast as the tears from the sky. I think people would have thought God or whatever higher power was out there crying with me. It was the big tears and rage style of crying. I was a mess and I guess anyone receiving that kind of news would be, too. If there is something I hate more than not being productive, it is giving people bad news. And because I just received my earth shattering news that I have cancer I would need to tell other people that, too. 

I have cancer. Fucking cancer. Fucking fuck fuck. 

Fuck.

I hope the more I say it and the more I type it, I can grab hold of the magnitude of that word. It feels so far away. None of the questions I have matter at this point in time. How this happened or why I didn’t know until now get in the way of me asking me the questions that can save me. What do we do next? Where do we go from here? I can’t help but mourn those questions that won’t receive answers. I am not an overly analytical person since I am very heavily driven by emotion, but I keep looking at this situation analyzing how my cells went rogue and I had no idea. 

That part is the weirdest. I am out here living my life and my cells are just fucking shit up and I don’t even know. Then, one day you find out and it is the deepest feeling of betrayal. I exercise. I try to eat as best as I can (with parosmia that has made that a very hard task). I don’t really drink. I laugh a lot. I go to therapy. I try to just love everything and everyone in my life. And yet, sometimes it is not enough or it doesn’t matter because we can’t control the copying of our cells and when our cells fuck up. 

I am processing my doom cloud as fast as I can so I can focus on treatment and healing. But today I want to be in that cloud and just be pissed. I am not really mad at anything, just hate that cancer is a thing. It has hurt countless people in my life. It is an intimate fear and I am actively living my worst nightmare. Today is going to be a hard day. I’ve got a learning curve ahead of me and a needle fear I have to overcome so fast. So many fucking needles. Fuck. 

Here are the facts that I know so far:

I was told I have breast cancer in my right breast that has spread to my lymph node in my right armpit. I have a meeting with my breast doctor today at 10 am. There is a possibility that I might have a breast MRI today as well. That probably scares me the most because I have a HUGE fear of needles and will need to face that head on and honestly I hate that. I hate it so much. I am hoping to learn more about my diagnosis, stage, treatment ideas etc. today. 

I am choosing to keep my story as public as possible. This is a great moment to share how important self breast exams are and advocacy for your health. I recognize that our healthcare system is broken and that I am extremely privileged as a white woman with insurance to navigate this system differently than many people. I hope to learn a lot to help others down the road with this experience and use that knowledge to advocate for better healthcare for all folks. I am grateful for every single text, message, comment over the last 12 hours. I am overwhelmed so if I am slow to reply, be patient. I will respond soon. 

I came here to kick ass and chew bubble gum, but I am all out of bubble gum.