Alright, this is a post that has been in the making since March…Not sure why it has taken me this long. As we approach my 1 year mark with an MBC diagnosis I felt a need to revisit this topic. Continue to ask me questions when they come up; happy to answer them along the way.

I have been asked a few times if I knew that I was at risk of becoming metastatic. This is an interesting question because it comes from people within the cancer community as often as it does from those outside the cancer community. Because I understand stats pretty well and I am a firm believer in the phrase “knowledge is power” I knew my risk was higher post diagnosis 1, than before. But if I am completely honest, I didn’t really think it would happen to me right now, or in this way.

What I mean by that is that I thought I could have another tumor come up in my breast again, and that would be considered a local recurrence; not metastatic. I really didn’t think it would come rearing its ugly head in my sternum, bones, and lungs. I always knew that I could be the 1 in 3 early stagers that could turn metastatic, but I thought that more than likely it would come back as another small tumor in my breast years from now. I would rationalize by telling myself that there are women with way more risk factors than me that have a much higher chance of recurrence.

Let me take you on a little trip down memory lane, back to 2016. I had Stage I hormone+ IDC with no family history and no known risk factors. At that time I was a healthy 31-year old that had started menstruating late, had children by the time I was 30, breastfed them both for a total of 35 months, wasn’t overweight, exercised more than the average person, didn’t smoke, ate a healthy diet, and only had a few drinks a week.

In the U.S. 1 in 8 women will be diagnosed with breast cancer in their lifetime. When we lived in Eugene I had a core group of friends that totaled about 10 women. If you do the math at least one of us would get breast cancer in our lifetime. In 2014 a good friend of mine from that group was diagnosed with breast cancer and when I was diagnosed in 2016 she said “dammit, I thought I had taken one for the team.” Unfortunately for us, that’s not how stats work and yet our brains try to make sense like that.

When I was going through radiation, during my first diagnosis, I remember telling my mentor and friend that it feels like cancer returning to my body was a matter of WHEN not IF. She responded the way any good mentor does which was with a that’s not necessarily true. Her own story included a Stage I diagnosis with no family history or risk factors and a reoccurrence YEARS later, and her reoccurrence wasn’t metastatic. She was living proof that it could come back but it didn’t have to be a death sentence. This is what I pictured for myself too.

When I first felt the tumor on my sternum in the summer of 2018 I didn’t think mets. I kept telling myself, nope not me, this is a regional recurrence, something contained to this area in my chest, no where else. Sometimes denial or compartmentalizing is what we do to deal. It was my coping mechanism because sometimes stats don’t tell my story the way I think they should.

So did I know it could happen to me? Yes, I was acutely aware that it could happen to me. Cancer clearly had it’s own plan and didn’t consult with me though, because here I am 3.5 years out from my first diagnosis still playing with numbers and wondering which stats will apply to me and which won’t.

You may be wondering what’s happening in CancerLand, or maybe you’re not, and if that’s the case, you’re in the wrong place. But if you have been patiently waiting here’s the IOU that is due.

Three weeks ago, I went in for my usual infusion appointment. It just so happened to also be an appointment where I was getting scan results, so I brought a friend. Scans were stable. For those of you lost on what that means, that’s good news. We love shrinkage, and we also love stability. Stable is good. Great, in fact. The longer I am stable, the longer I get to be on this drug line, and that means I won’t exhaust my limited treatment options too quickly.

But on that day I ran into a little hiccup. My blood work didn’t look as good as it has in past workups. I was neutropenic, which means my white blood cell (WBC) count was lower than 1000 or 1.0 depending on which scale we are looking at. Low WBC indicates a suppressed immune system, which means treatment adjustments. It turns out that in the grand scheme of things, this ended up being a minor issue that day because my neutropenia wasn’t severe.

After some discussion between my oncologist, my research nurse, and myself, we agreed that I would still get my pembro infusion, but we would hold the abema (the daily oral drug) for a week. I would return in a week for blood work, and if my white cells rebounded, I would have my oral medication released to me. One of the things I love about my team is that they listen to me. I fully got a vote on how to handle this situation. So that’s what I did. I got my infusion, returned in a week, my numbers rebounded (just barely), and I got to re-start on the abemaciclib.

I was really anxious about being off my meds for a week. But oh what a sweet week it was. I drank coffee with no stomach cramps or other GI issues and I had normal levels of energy. I still had menopausal symptoms, but it all seemed tolerable with a daily cup of Joe. And as soon as I went back on the oral drugs all of the side effects returned.

As you might recall, I have been having some back pain for a while now. It’s something that hasn’t gone away with OTC or stronger pain medication, but it is manageable. But I went in for an MRI of my spine to see what we could see, just to make sure it wasn’t anything affecting my spinal cord. Turns out I have some disc degeneration/maybe arthritis, which isn’t uncommon, so I am heading back to BWH to meet with an orthopedic specialist in a couple of weeks to discuss how to manage the pain and learn more about what it all means. Right now, I feel lucky that I am still mobile and can handle most days, even if I feel more limited than I did before.

And that sort of wraps everything up! I came in today to have my infusion and blood workup done. My WBC numbers are just barely over 1.0, but what counts is that they are good enough to receive my pembro infusion and get my oral drugs again. At my last visit, we discussed why my counts might be dipping, and my oncologist said that after a year or so of using these drugs bone marrow can get fatigued; in other words, it is having a harder time regenerating itself. That’s why a break from the medication allowed my body to recuperate. If I have another episode of neutropenia, then I will have to do a permanent dose reduction on the abema. For now though, it’s full steam ahead!

Coming up, I have a couple of cancer events I am looking forward to participating in. This weekend I am going to a Vintage Vogue Runway for Research fundraiser. The event will consist of a panel discussion and a vintage runway show. The funds raised go towards the MBC research fund at DFCI. And then next weekend I will be heading to Philly for the Living Beyond Breast Cancer (LBBC) conference. I was able to secure some funding to attend. The LBBC conferences tend to be research-heavy, which if you know me is like music to my ears. I’ll definitely let you know how they go.

Alright friends, if you have read all the way to the end here, I am impressed. Thank you for all of the support and love! xoxo

I’ve said from the beginning that cancer is an inconvenient bitch. On Sunday I had one of those inconvenient moments (Errr, more like 7+hrs). With a visit to urgent care and then the ER, I can confidently say that I don’t have pneumonia or a pulmonary embolism (PE), and I didn’t have a heart attack or stroke. But I still don’t know why I experienced what I experienced that landed me in a somewhat emergent situation.

Sunday afternoon I was happily sitting poolside, watching my kids play in the water while having a nice conversation with a friend when I felt my throat and chest sort of tightened. I could breathe, but taking a full breath was difficult. I slowly withdrew from the conversation (hoping no one would notice) and concentrated on my breathing. It felt like I could only fill the top part of my lungs with short quick breaths and if I tried to take a normal breath it would take a great deal of effort. It was frightening. But after about 5 min of calm, concentrated breathing I could breathe somewhat normally.

Unfortunately, this wasn’t the first time this had happened to me. A little over a week before the pool episode, I had been at an awesome 40th birthday party when it happened the first time. We were outside, it was super humid and hot; I wasn’t exerting myself in any way, just talking with a friend when I realized I had that same feeling of tightness and labored breathing.

Now I didn’t call my oncologist the first time it happened; I was able to get inside, to a cool dry environment and I felt completely normal after that. Similarly, with the pool experience, once I was home and in the AC I could breathe somewhat normally. I say somewhat because I am recovering from an upper respiratory virus that started just a few days ago, so it is expected that my breathing wouldn’t be perfect. But with two incidences now I felt like a call to my oncologist was the right thing to do.

Dr. Tolaney wanted to rule out things like pneumonia, heart attack, and PE. I got all the tests (X-Ray, blood work, EKG, CT scan) and everything came back well within my normal ranges. I am so relieved that everything checked out. I’m curious why I had these little spells, but really hoping I don’t ever feel one again!

So yup, the whole ordeal took more than 7hrs of my day. I missed dinner with my family and missed putting my babies to bed. I am thankful for the family and friends I have that offered to keep me company or that helped to love on my kiddos during all of this.

This Thursday is my next infusion so I will see my oncology team and go over everything again. Maybe I’ll get some answers 🤷🏻‍♀️

Scans last Saturday show stable! Lucky #13 down. On days that I get scan results, I bring a friend, just in case I need the support if the results aren’t good. But since all the results so far have been great, we celebrate 🎉

I love leaving appointments laughing and joking around with my team. I am such a fangirl of this place. No other place I would ever want cancer care.

I don’t say this to mean I love being a patient. I don’t. I would love to have a typical 34-year-old body and experience. I would love to fill my time with a job that fulfills me and to have the energy and health to keep up working full time. I would love to garden and feel great the next day, not feel like I just aged 50 years. I would love to sit on the ground with my kids and feel confident that standing back up wasn’t going to hurt. I would love to unlearn the insides of many public restrooms. I would love to sleep fully through a night without waking from hot flashes/night sweats/insomnia. Just to name a few things…but at Dana Farber, I am well taken care of. I am confident my team brings their A-game to each of my appointments. And for this specific situation, I know I am exactly where I am supposed to be.

Xoxo

Another day of great results. My lesions are shrinking. A lot. These drugs that I take on the daily and the ones I get infused through my port every three weeks are keeping cancer at bay. Could my doctors tell me that the cancer is totally gone one of these days? No, not likely. Not right now. I could reach the point of NED (no evidence of disease) but the cancer will still be there — unseen by imaging but waiting, sleeping, looking for a way to outsmart these drugs. That’s what happened before. It will likely happen again. I am a very positive thinker. I am celebrating with every good news report. I am also realistic and see women progressing and dying on a regular basis. This isn’t an “easy cancer” to deal with. It’s intelligent. I won’t back down though. Whatever MBC throws at me, I have the strength to push back and I have the most amazing evidence based team around. Celebrate with me! Feel good with me!

9 rounds of immunotherapy down. That’s pretty sweet!! We need to celebrate our wins and push for continued research and ways to find a real cure for this beast.

To say the last two weeks were crazy is an understatement, but we got through it like champs!

Huge thank you to my in-laws that stepped in while Andrew was out of town. Between multiple doctors appointments for myself and my son, everyone stayed afloat, barely and not without lots of help. We also managed to all get the stomach bug which added to the insanity. My sisters and niece arrived in the middle of our bug and so far only one has gotten sick. I am thankful they haven’t been scared away. But sharing is caring right?

Results are in: colon looks healthy enough to continue with treatment. The inflammation thats on the CT isn’t due to immunotherapy which means we don’t have to hold any treatment at this time. Yay!

I also had a neck MRI last week which showed a bulged disc. No big deal in the grand scheme of things.

Thanks for the prayers and well wishes friends!

Xoxo

Last weekend you may have noticed that I posted a lot more photos on social media than I normally do. I attend a conference called YSC Summit 2019. This group (YSC) is all about connecting women (and men) diagnosed with breast cancer before the age of 40. There was about 600 participants and I had heard that those of us with MBC made up almost 10% of the whole. I met some other really wonderful young people living and thriving with MBC. Some folks were newly diagnosed and some are YEARS out. It’s inspirational to say the least to see most of these women thriving despite our cancery bond.

Group photo

This year the Summit was held in North Austin, TX. I didn’t get to really see Austin, so I need to go back. Just not on a Sunday because you can’t buy alcohol on Sunday?! 😬😉

While at the Summit my roommate was my friend Misty. She was diagnosed a couple of years before my first diagnosis in 2016. We were friends before cancer – our kids are what brought us together in Eugene. Then after Misty’s diagnosis and then mine, we found another way of connecting with one another. Bittersweet really that we have this other connection.

The conference itself was decent. The keynote speakers were great. They spoke about the collateral damage (CD) of cancer. I have had a blog post titled Collateral Damage in my drafts folder for weeks now. And just a couple of weeks ago I also came across a great blog post also all about CD. If you don’t know what I mean when I talk about CD I promise in the future I will finish that post and you can learn all about it. Cancer is an inconvenient bitch and it never stops taking, which is the basis of CD. I don’t like the focus that much on CD because it often feels like complaining, and it isn’t positive. Most of the time though I can be positive and compartmentalize the bad/ugly/messy parts of cancer.

I also got a chair massage at the Summit, ate some delicious tacos and Texas BBQ, attended a meditation session, and spoke with lots of vendors at the expo. Fun short trip to some warmer temperatures 🌞

Results are in! More shrinkage 😂 saying that really never gets old.

My oncologist is super pleased with the total reduction in size. She said it’s like A+ work. I definitely cannot take credit outside of making sure I take my meds and show up for infusions.

Today we celebrated the scan results and discussed a few other things. My thyroid is slowly moving back into the normal ranges. It’s closer with every visit.

The scans showed some thickening is my colon. It’s mild, but apparent enough to be referred to an gastroenterologist. I will consult with them but I will likely have some testing of my colon tissue in my future. My oncologist isn’t overly concerned about it, but we want to figure out why this thickening or inflammation is happening. There are plans in place once we figure out whether it’s due to the immunotherapy or the abemaciclib.

My neck has been really bothering me lately. As have my hand joints. The pain in my neck and hands could be related or maybe not. Also, sometimes an AI can cause joint pain, which my hands and neck are all joints. We have to do some further investigation. I will have an MRI of my neck just to see if there is some obvious reason for the pain.

And finally today we made a plan to deal with my lack of decent sleep. I have been having lots of hot flashes at night and the neck pain isn’t making it comfortable for sleeping either. I have had a harder time falling asleep, staying asleep, and waking rested. It’s frustrating! I have been taking melatonin and magnesium at night but still haven’t had a successful nights sleep in a while. I was told to increase the melatonin I was taking (as much as 7mg more each night) and also to use Ativan every few night if I need it.

I started working out again, very lightly. My ultimate hope is that exercise will help me gain some energy back during the day and help me sleep better at night. We shall see!

Thank you for all of the sweet emails, texts, and cards you have sent me this last week. I really truly love each of them!! You are the best group of cheerleaders a MBC gal could ever have.

I added another infusion to the books today. It’s been 4 months and 11 days since my first infusion of pembrolizumab and there’s so much to be grateful for. It’s a YAY-day! Xoxo