so you’ve just been diagnosed
This has been on my heart and hanging out in the drafts of this blog for a bit. When I was first diagnosed I was of course terrified. But also, a little miffed that it seemed there was NOTHING out there with a real world look at what the hell was to come. The anxious part of my brain craved a road map of what to expect. I seriously wanted to know every detail - like what do I wear to an MRI?
I know now everyone’s road is very different. Everyone’s breast cancer is very different. My story is absolutely nothing like your story. But, I thought I’d share what I wish I knew in the beginning of this shit show. Also, a huge caveat, I’m still in chemo treatment so there’s a lot of road ahead of me. This is just what I know so far. But, also, I’m here to show you that chemo may not be that horrifying for you! I’m 9 treatments in and my life is pretty similar to what it was before cancer! I’m here to give you some hope!
You might be waiting for a diagnosis. I don’t really have advice on that. I was lucky and unfortunate in that the radiologist at my mammogram told me the news with sad and teary eyes. While that was traumatizing, I’m not sure how I’d handle the worries after a biopsy and not knowing. The surgeon who did the biopsy, the same day as my diagnostic mammogram and ultrasound, got preliminary tumor markers back within 10 minutes of the biopsy. I knew, without a shadow of a doubt, that I had breast cancer the same day. I know most people don’t experience this. But, what my experience was like from biopsy on, I’ll share in hopes that it eases some of the unknown for you?
Your hydration is VERY IMPORTANT from this moment on. Number one tip - start drinking water. More water than you think you’ll ever need. The scans and things coming up are much better if you’re hydrated. From here on out you’re drinking water to flush everything out like you just got back from a five day bachelorette party.
Telling friends & family
This could be a whole separate post. I’m an open book (hello, this blog!) and my friends knew about my mammogram appointment and the large lump. Most of them had felt it! So, I was kind of forced to tell them pretty quickly. Also, I have my life scheduled to the minute pretty much so there was a lot of canceling coming soon. This is a deeply personal situation and I don’t have a ton of advice for you. I told people pretty quickly, like day of. And I’m SO happy that I did.
Biopsy & healing
Honestly, this biopsy site was the worst so far in this shit show. The biopsy is horrific. I truly can’t sugar coat it for you. I took two Xanax before and had my mom there holding me down.
The healing as well was pretty gross. I couldn’t look at it or change the dressing for a few days. But, listen to your doctors and wear a sports bra. It really helps with the pain and the bleeding. I didn’t listen so it bled a lot for about two days before I had the courage to put on a sports bra. I’m a great patient! ha. I got breast feeding pads for my bra and used those for a few weeks. Yes, weeks! It has been almost 3 months and it’s still bruised. But, this really is the worst part. So far.
Finding your surgeon
THIS IS IMPORTANT!!!!! I got really lucky that my friend Virginia just landed Dr. Clifford Deal in my lap. A great surgeon with a personality and bedside manner that fits you will make all of the difference in the world. Dr. Deal is amazing with me and also aggressive with treatment. He curated the rest of my team and convinced the best oncologist to take me on. My oncologist is the oncologist for other oncologists. I also got lucky that my curated team was in network with my health insurance.
This part is going to feel like a blur. It’s overwhelming. You feel really rushed because you’re like holy hell what is happening get this cancer out of me. Don’t feel like you have to stick with the surgeon who does your biopsy. Or you have to stick with anyone throughout this. I will get another opinion ahead of surgery.
Also, ask for a Patient Care Navigator - this person will be your ANGEL. My navigator scheduled ALL of my staging scans, texted me everything and was there for any questions, and coordinated to make sure appointments were grouped together. There are SO MANY APPOINTMENTS coming up! Like this will be at least two weeks of nothing but appointments, tests, needles, and overwhelming emotions. These really are your worst weeks (okay, I actually don’t know that for sure because I’m still in chemo). She still schedules appointments for me, deals with my health insurance and pre authorizations, and is there to help with coordinating support groups and really any help that I may need. Again, she is a literal angel.
Staging Scans
First, there’s a lot coming at you very quickly. Don’t try to be super woman and go at this alone. If my mom hadn’t persisted I wouldn’t want to burden anyone because there’s just so many appointments. Even if you’re okay with needles and medical procedures - it’s very helpful to have someone with you. As many have reminded me multiple times - I don’t have a husband or partner. So, without my mom I would have probably gone at this solo.
Staging scans are scheduled quickly. If they aren’t - FIND A NEW TEAM. My scans were scheduled before we knew I was Triple Negative. Thankfully they were since it’s the fastest growing breast cancer. My breast changed within the two weeks of the staging scans - it was growing into my skin. You want these scheduled quickly and you need to go wherever you can to get them quickly.
This is what I had - you might have something different.
Breast MRI - ASK FOR XANAX! I can be pretty still and I don’t really think I’m claustrophobic. I’ve mastered the art of disassociating when needed so I thought I’d be fine. I took Xanax just in case and the urging of my doctor. It was definitely needed. My MRI was done with and without contrast. I wore leggings, a tank, and a jacket. Oh and my beautiful long hair (RIP) was up in a bun because it might have gotten caught in the machine. They give you a gown to put on but you keep your pants on. I also brought socks (my Pure Barre socks of course) and they were helpful! They put in an IV and the MRI machine pushes the contrast halfway through. So, this MRI is done while you’re on your stomach. You awkwardly climb onto the table and the nurses take off your gown and place your breasts in the holes and then move these paddles to kind of constrict them to the same place. It’s not as tight as a mammogram. Your head is in a hole like a massage table. You are then pushed into the machine and it’s loud. It’s a repetitive noise. I just kept repeating in my head “just breathe” and still couldn’t shake that the sound was more like a bad techno beat or it was saying “die” over and over and over. It took about 30 minutes total and then I was on my way. (Side note, my vein blew when it pushed the contrast which isn’t normal. I wrote about that somewhere on this blog)
CT Scan - this is the one where the contrast makes you feel warm - like you’re peeing yourself. But, it’s easier than the MRI. You’re just on a table on your back and it’s not nearly as closed in. They let me wear my regular clothes so I was in my yoga pants, a tank, and light jacket. They do an IV for the contrast so make sure your arm is easily accessible.
Bone Scan - similar to the CT scan but I don’t remember that there was any contrast? I did the CT and Bone scans on the same day. This one the machine kind of moves over you instead of you moving into it. It got a little close to my face at times but otherwise it was fine.
These scans will help your oncologists determine what stage you are in and your treatment plan. I started getting anxious because it’s kind of scary to not know if the cancer has spread. But, knowledge is power. I kind of just tried to block out the worst case scenario.
Genetic Testing
Your patient care navigator should set this up. I met with this great genetic counselor who explained all of the reasoning behind genetic testing and what it means. They took some blood and then we just waited! I have zero genetic markers for any cancers they can test for. Woo! But also, just means I have shitty luck.
Fertility
This is another one your doctor and patient care navigator should set up. You should ask for this early on if they haven’t brought it up. The clinic they suggested offered free consultations for cancer patients (yep, that’s you now, which fucking sucks and I’m sorry). I skipped this. Hopefully I don’t regret that later on. I knew I wasn’t going to freeze my eggs and honestly was just so overwhelmed I couldn’t face it.
Oncologist Appointment
Once your staging scans and full biopsy results are back you will meet with your oncologist. This is when you learn your treatment plan. I am incredibly type A so this calmed me. At this appointment she did a breast exam and then discussed the chemotherapy and treatment plan with me. This is a good one to have someone with you for so they can help you absorb everything.
Port a Cath Surgery
My doctor didn’t really present a port a cath as an option. He just kind of said we’ll do your port surgery on September 10th. He put me under anesthesia but I think this can differ? I’m a big baby and he knows that. It’s a quick surgery but with recovery from anesthesia it can be a full day affair. I had surgery the same day I was moving so that added an extra layer of stress. If you’ve never had outpatient surgery this might be kind of daunting. But, they give you good drugs and you’re out the entire time so it’s not bad! When I woke up I wasn’t in a ton of pain but moving my arm was difficult for the first 24 hours. I was in some pain and took the pain killers the next day but then less than 48 hours after the surgery I went on a girl’s trip to the beach. And you can’t lift more than 5 lbs for 4 weeks afterwards so they packed everything and carried my things to the beach. They’re angels!
Chemo Consent Appointment
It’s truly insane to me that you have to sign a paper consenting to pumping your body full of poison but you have no other choice. I lied to my mom about this appointment so she’d go on her scheduled beach trip. I don’t really advise going solo to this appointment. They drew blood and then I met with the nurse practitioner. She went over every single side effect that could happen and then the pharmacological counter part of that side effect. There’s a med for everything! She had a printout of everything and gave that to me. This has been a life saver! Get a binder and start keeping these things. You’ll also get a printout of your chemo schedule.
This is where you’ll get a list of over the counter meds to buy to help counteract side effects! You’ll definitely want Claritin (or Loratidine - generic), Senekot, and my best friend - Xanax.
Active Treatment
And now you’re off!!!!! The frenzy starts to slow down. You have a schedule now. You’re actively fighting this cancer!!!! You know what you’re facing and you’re more in control. Time will absolutely fly. I promise it won’t feel like a standstill the entirety of treatment. Before you know it you’ll be 10 weeks in (which is where I am and it kind of feels like it has been 10 years)!
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The days leading up to starting treatment were truly the hardest days of my life. I can’t tell you how many tears I cried. Like ugly, guttural screams. I thought my life was over. I thought I would feel that terrified, weak, angry, and sad forever. It didn’t help I was going through heartbreak and moving at the exact same time as well so I was sure I’d be dying alone. But, I’m here to tell you, like everything in life - it gets better. There are deep belly laughs, smiles, and easy days ahead I can really promise you that. The ugly tears will come, more often than you’d like. But then the laughs come back and the roller coaster continues.
Between appointments I lived my best life, though. I still went out with friends (and cried at the bar but that’s really nothing new) and I did a scheduled limo winery tour (which I only cried once and it was because I was SO HAPPY). I begged my oncologist to let me do my week OBX vacation with the gals and she agreed. I did the things that brought be joy and those memories and days got me through it all.
I hope this helped at least one person. Again, this is just my experience. Everyone’s might be different. But, if you can pick and pull little pieces that are similar to what you’re facing then I’m happy with that. I’ll likely do a “So you’re starting Chemo” post later when chemo is over and I can really dig in and reflect on the things I’ve learned.
