Welcome back! It’s been a minute; my apologies. The last 8 weeks or so have somehow both crawled by at a snail’s pace and blown past faster than Micahl J Vegter on his rollerblades. I had an infusion today, so I know that between the steroids and frequent chemo-induced trips to the bathroom, I’ll likely be painfully awake for the foreseeable future. Therefore, I am taking advantage of this opportunity to write some updates and fill people in on the latest and greatest along this horribly fantastical and totally crazy cAnCeR jOuRnEy.
In no particular order of importance:
1. I have something weird and new attached to the inside of my heart. I’ve now had three “regular” echocardiograms (ultrasound of the heart from the outside), one trans-esophageal echocardiogram, or “TEE” (they put me under and slid a tiny camera down my esophagus to take photos of my heart), and a heart MRI to analyze this mysterious being living inside my right atrium. The right atrium is the location where my port line enters my heart and delivers the chemo drugs to my bloodstream. They thought it was a blood clot at the first “mid-chemo check-in” echo about 6 weeks ago, so they infused me with a “clot-busting” medication that did nothing (the clot was still there at the time of the repeat echo a week later), so they scheduled me for the TEE which happened two weeks ago.
I went in last week for a follow-up with my cardiologist after he reviewed the images from the TEE, and it looks almost as though the tip of the catheter might be rubbing up against the wall of my heart every time it beats, and this might be causing irritation and scar tissue to form along the wall. However, he still couldn’t tell for sure if it’s potentially a mass or a clot, so they had me go in for a heart MRI so they could get more detail on the shape and size of it. Results of the MRI showed that there is something with a stalk (it looks like a mushroom) adhered to the wall of the atrium, and the cardiologist who read the MRI reported that they suspect it is made up of tissue rather than a blood clot. So this wasn’t exactly the news I was hoping for. However, my cardiologist and oncologist agree that it would be very odd for a cancerous mass to grow within a span of just a few months right in the location where the port line is spewing cancer-fighting drugs into my heart, so they are still hoping that it’s either a really dense clot that looks like tissue or a benign tumor of the heart called a myxoma. If cancer metastasizes to the heart, it is normally to the outside of the heart, and my oncologist has never seen breast cancer metastasize to this area, so we are all still hopeful that it’s not cancer in that mushroom. It still is a really frustrating and unnerving part of all of this, but for now the best we can do is monitor with echos every 2 months until I can get my port line out in about 9 months when I am fully done with the chemo infusions. If it grows during that time, we will likely have to go in surgically through my ribs to remove it. But for now, we will focus on continuing the chemo, staying on blood thinners, and prioritizing the breast cancer over addressing the heart issue directly.
2. That brings me to some news I received today that was also kind of unexpected, but good to know sooner rather than later. My oncologist can still feel the lymph node in my armpit, and due to this and the size of my tumors at time of diagnosis (although they are shrinking quite a bit), she suspects I will still have residual cancer at the time of my double mastectomy. This is not uncommon, especially when the cancer has spread to the lymph nodes. I was expecting that, but she did also mention that if we do find residual disease at the time of surgery (if my lymph node biopsy comes back positive that day), I will have to continue a type of chemo every three weeks by infusion for about another 9-12 months. Because of this, I have to keep my port line in for the duration of that therapy. So, every three weeks for about the next year, even once I am done with these initial 5.5 months of chemo, I will be getting three drugs- Herceptin, Perjeta (or “HP”, which I currently get with the Taxol) and Kadcyla (the chemo drug), via my port. I don’t know why, but I had been thinking the Kadcyla was a pill and that I could get my port out at the end of these first months of chemo and just get the HP as an injection rather than IV. I’m not stoked about this info, but I’m glad I know it now and can somewhat change my expectations for a timeline. This also means that my reconstructive surgery and hysterectomy will likely be farther down the road- I was hoping for next fall, but it’ll likely be closer to spring 2023. This is something I’ll have to figure out with my vet school clinical year schedule once I know more about how much disease remains post-surgery.
3. I met with my breast surgeons down at Anschutz over the past few weeks (2 of them) and I love them and we have a new surgical plan. They don’t think it’s necessary for me to do the latissimus dorsi surgery, since they think my capabilities for healing will overall be pretty good, so we are going for regular double mastectomy and removal of whichever lymph nodes need to be removed rather than involving my lat muscle. The surgeon I am going with said that it’s a great surgical option as a last-ditch effort for those who really need it, but it’s a bigger surgery and involves taking a lot of that muscle out, and he’d like to avoid doing it if we can. So I am happy about that. So, double mastectomy it is. At the time of surgery they will sample my lymph node to see if it still has cancer within it or not- if it does, they’ll take out more lymph nodes, if it doesn’t, they’ll take out just a few. Based on my oncologist’s news today, it’s looking likely that they’ll do the axillary lymph node dissection (removing more) rather than just the sentinel node. The bigger risks of taking more out are lymphedema and longer recovery time, so I’ll for sure be doing as much PT as possible, no matter how many they remove. They’ll be placing a little Savi (radio transmitter thing) into my lymph node in a few weeks so that during surgery they can be absolutely sure that they are removing and sampling the correct node in order to assess whether or not there is residual disease. My double mastectomy is currently scheduled for Wednesday, February 23rd at Anschutz in Denver. Prior to surgery, I’ll have 5 more weeks of the current chemo infusions, meet with the surgeons one more time to finalize the plan, another MRI done of my liver, another breast MRI, another heart echo, the Savi placed in my lymph node, and hopefully some time to heal a bit from the initial 5 months of chemo.
4. I met with an OBGYN at Anschutz to talk about having a total hysterectomy/oophorectomy (removal of my uterus, cervix, and ovaries). Because one of my tumors is estrogen-fed, my oncologist (and OBGYN) highly recommend having my ovaries removed. Unfortunately this means super early menopause which can lead to a number of issues down the road, including poor bone health, heart disease, anxiety/depression, sexual dysfunction, dementia, and some other things. However, these are all lower risk than the risk of my breast cancer recurring if I were to keep my ovaries. They are all able to be addressed through prevention, medications, and other methods of management. So, although early menopause really blows, I just have to do it to lessen my chance of having breast cancer again. Right now I am in “chemopause”, as the chemotherapy drugs have shut down my ovarian function, so I am going through some of the symptoms that women in menopause experience. I have hot flashes in the evenings and during the night, and have a really hard time regulating my temperature. I also had some exceptionally anxious/depressed days a few weeks back and couldn’t figure out why until my OB told me that the shutting down of ovaries and loss of estrogen are the root cause of depression/anxiety for most women going through chemopause. So they put me on an SNRI (Serotonin and Norepinephrine Reuptake Inhibitor) medication that is supposed to help address both the hot flashes and the anxiety after a few weeks of taking it. I am starting to see lessening in the hot flashes- they aren’t all night every night lately- so that’s been a huge help. Most days, if I get ok sleep and stay busy, I don’t feel the intense depression/anxiety tied to the hormone fluctuations. However, I think the meds will really help as I continue to move through these hormonal changes as well as the rest of chemo, surgery, radiation and beyond. The estrogen will be absent through the rest of this initial bout of chemo, and then they’ll put me on an estrogen-suppressing drug until I can have my ovaries removed at the time of reconstructive surgery, whenever that may be.
5. Now for some GOOD news…Brandon and I closed on a cabin just outside of Breck last week! We are beyond excited. It’s in an awesome area called Blue River that is about 10 minutes’ drive from downtown Breck, but removed from the chaos and up a fun winding mountain road. It has a view of the forest and Quandary Peak, one of our favorites. It’s 3-bed, 2-bath, has a hot tub and a fire pit and tons of potential to be an amazing space. We are getting it all spruced up and ready to rent out on AirBnB hopefully by spring. We’ll be able to enjoy it half of the time and rent it out half of the time. I’ve been doing a lot of research on running a successful AirBnB, Brandy has been super busy getting all the inspection stuff addressed, and we have been planning some cool bathroom, kitchen, and fireplace remodels. I am super excited to enjoy cozy cabin nights, tons of snowshoeing, skiing, biking, and hiking, sharing it with friends and family and making lots of awesome memories there.
6. I spent a wonderful few days this past weekend with my family (and Brandy) celebrating an early Christmas at a cabin in Granby, Colorado (near Grand Lake) where we had lots of fun cross-country skiing, having snowball fights with shields, sledding, running around with the pups in the snowy yard, and playing lots of Monopoly Deal. It was a week of feeling pretty good with decent energy levels and only moderate side effects, so I was able to enjoy the activities, albeit at a slower pace than usual. My family was super understanding of my nighttime exhaustion and the need to get to bed at 8 pm rather than staying up for family games, and they even fanned off my bald head with placemats when I’d have hot flashes during card games 🙂 My nephews were really sweet, even when seeing me bald and lash-less, and the night I wore my wig for dinner my youngest nephew asked in astonishment, “Whoa! How’d you grow your hair back so quick?!” I had him tricked, if even for just a few seconds 🙂 It was a lovely getaway and a welcome distraction from the current cancer patient existence.
Whew- if you’re still reading this, thanks for sticking with me. It’s hard to remember all the fine details, feelings and emotions over the last few months as I write this because I feel like every week is somehow so much the same but yet so different based on side effects and new information that scans and tests bring in. Some days I wake up and feel like I can handle all of this, and some days I feel a crippling fear knowing that my life is changed forever. Cancer and the myriad of ripple effects that it will have both physically and emotionally is still something I grapple with on the daily. As surgery gets closer, I feel more and more anxious about losing parts of my body to this disease and harboring the scars and residual pain that will remind me of it for the rest of my life. As side effects wax and wane, I feel the frustrations of losing control of my body and not knowing what to expect from one day to the next. I am trying to walk as much as possible, meditate every day, do yoga when my body is up for it, continue acupuncture and oncology massage, and have met with an integrative oncologist to discuss natural supplements and options that can aid in managing chemo side effects, early menopause, surgery recovery and radiation effects. I managed to finish my Spanish for veterinarians class with an A and absolutely loved the course, so I am signed up to take the next two installments of the course over the coming semester. I still try to work whenever I can, and the company I work for continues to be incredibly patient and supportive and understanding. Brandon and my family have been there for me every step of the way, and continue to dole out unconditional love, even when I appear at the breakfast table looking and feeling like a naked mole rat with a bloody nose.
So I let myself feel the crud and sit with the darkness when it happens, but I continue to be grateful for all of the support and love that I feel every day. And of course, taking care of my dogs and my hopes for completing vet school and helping more animals after this sh*t is over gives me a reason to get up and get moving every day. Sending cozy COVID-free holiday vibes, love, and doggie kisses to all of you!
3 thoughts on “8. Heart Times”
Hi Amanda, I have been thinking about you. So sorry to hear about your heart issue. What great pictures of you and everyone. Eight o’clock for bedtime is totally OK if it means you can do all that stuff during the day. Trying to think of the right way to put this. Yes our bodies are forever changed, but as long as we kick cancer to the curb we can work on dealing with the rest of it. You are in my prayers. Merry Christmas and a Happy New Year. Mary Rose, MN.
Amanda- you are such a warrior with cancer, and a gentle giant with the rest of your life! So glad you have times when you are feeling good enough to do all the things. What an amazing family you have, and what an amazing woman you are with all of this! Merry Christmas, and prayers continue for you to kick this disease without too many side effects!
Hey you! Gosh it’s been ages, been following your blog with love and hope and tears and hugs and all of the above. You really are one of those people I have always aspired to be more like! With you in spirit every step of the way and sending you sunshine, and love…. And treasured ocean memories! Xxx