One *NOT* Fine Day

September 7, 2023

How it started…

I discovered a lump on my left breast while I was nursing Camden. I called my OB the next day and scheduled an appt for the following Monday. I saw an OB who I hadn’t met yet, as my former OB who oversaw all my pregnancies had left the practice. Thankfully she was great and I really liked her. She inevitably ended up referring me for a Mammogram. I had not gotten one since turning 40 last December, as it was advised at my Annual in January of this year that I should wait until 6 months after nursing, as the imaging would not be as clear.

When I called to schedule it, they said because I’m nursing they would do an Ultrasound instead. 🤦🏾‍♀️ On September 22nd, same day Jalen later fractured his leg (the hits keep coming), I had the Ultrasound. My Mom came with me. Due to what was observed on the images, they wanted me to do a Mammogram immediately after. It wasn’t as bad as I imagined, except for the side where the lump is, which hurt quite a bit. The doctor came in afterwards and basically said due to what is considered to be a “suspicious finding,” they were now referring me for a Breast Biopsy.

The notes in my chart via the health portal following this appointment indicated the likelihood that it was something called Lactating Adenomas, which is common in those pregnant or nursing. I did a lot of googling about those and felt like it made the most sense.

I had my Biopsy on Friday October 13th (never a good sign). Mark was able to join me for that appointment. At the end of that procedure, the doctor actually said he was fairly certain they were Lactating Adenomas (Mark and I thought this was wildly irresponsible, but I digress).

I received those Biopsy results through the portal again (note to self to advocate for calls to patients with these results) the following Monday, October 16th. I was alone as Mark was at work, and I think I maybe assumed it was going to be what they had all been anticipating.

Instead, I read that it was Ductal Carcinoma, in Situ (which means in place). It also said “Grade 3,” among a lot of other things I didn’t understand. Naturally, I immediately started googling and while it was upsetting, most of what I was reading stated it is considered Stage 0/precancerous and that it’s noninvasive. Grade 3 did indicate however, that it’s the highest grade/growing at a faster rate with increased chances of becoming invasive. Treatment sounded like it would be radiation followed by breast conserving surgery (Lumpectomy) or a Mastectomy. This was all based on my googling so clearly not something to rely on.

I got a call from my clinic later that day referring me to Compass Oncology in Tigard. I received a call from them the following morning and scheduled an appt for the morning of Friday October 20th. Everything was moving fairly quickly while somehow feeling slow motion too.

I met with my surgeon that Friday. While I’m grateful that someone finally explained my diagnosis and what the plan is for treatment, I’m now left to process and accept what is next.

My tumor is 4.5cm (that is a decent size). Anything greater than 2cm puts me into Stage 2. It has not currently spread to my lymph nodes. There are some smaller clusters around the main tumor that they also want to biopsy. If it had/does spread to my lymph nodes, I would bump up to Stage 2B. There are only those two stages and then it progresses to Stage 3, which is more serious. Stage 2 and below treats to cure. 🩷

My cancer is what’s called HER2+ (Human Epidermal Growth Factor). HER2 is a protein that promotes the growth of Cancer cells. Mine is developing/dividing at a faster rate. HER2+ used to be considered a “bad” thing (because of the rate at which it grows), but they have come a long way and now in that they can target treatment and it’s become quite effective. HR+ or Hormone Positive, is another form which means the cell’s receptors are activated by estrogen/progesterone. I am negative for this.

My Prognosis is good and the timeframe of treatment is one year, or so I am told at this point. My treatment plan includes two medications that will target the abnormal cells. It is best initially administered with Chemotherapy. 😕I will have to do 6 cycles (once every 3 weeks, so for about 4 months). Following completion of Chemo, they will take images/biopsy (?) to determine if the treatment regimen is working (the goal is to shrink the tumor before surgery). If needed, they will adjust the medication at that point. There are a couple things that could potentially happen at that time depending on the success of Chemo (e.g. less invasive surgery or possibly more Chemo). Assuming all goes accordingly, I will be scheduled for my surgery which will be one month after completion of Chemo (mid March). At this point it is likely to be a Lumpectomy but if I have a genetic mutation or it has spread to my lymph nodes, I believe a Double Mastectomy will be the only option. Both would likely include reconstructive surgery.

Following my recovery I will then start radiation. That occurs daily but I am unsure of the duration. I will continue to receive the two medications (without Chemo) for the remainder of the year. Again, there is a chance I could need more Chemo but I’m hoping it doesn’t come to that.

I met with my Medical Oncologist on Monday October 23rd. She was really great and provided A LOT of info. I have a consult scheduled to discuss genetic testing on November 10th, which would indicate higher likelihood of reoccurrence, thus the need for bilateral Mastectomy. In addition to another Biopsy (to look at those small clusters) on December 1st.

I will need a PET CT Scan on October 31st to ensure it has not spread elsewhere. I will also have a Breast MRI done on November 2nd. A little anxious about both, though she's prescribed Ativan. Both vary in duration but the latter will be about 40 minutes face down, so maybe not as bad?

I will also be getting a Port Catheter placed the afternoon of November 2nd. This will be underneath my skin on the right upper side of my chest, through my neck and connected to just above my heart (instead of having to do IVs each session). Anxiety about this procedure and just having to have that in me for months. The actual procedure is 45 minutes, but will take about 4-5 hours total.

Chemo days will be 9 hours long from check in to completion (6 hours of actual infusion). It looks just like what we see on TV: Large comfy chairs in a big room with other patients. Plan to bring a blanket and sit with your support person (who wants to hang out?), water, snacks, read/watch a show, color, etc. Needless to say, my Amazon card has been busy.

Side effects from the meds I will be taking include but are not limited to diarrhea, peripheral neuropathy (pain, weakness & tingles in the extremities) and hair loss. 😢  I am having a very hard time with that last one. They do offer the option of a Cold Cap, which slows blood flow to the scalp and that can reduce the falling out / attempt preservation of some of your hair. Of course insurance doesn’t cover it but I’m too concerned about this to not attempt it. They prorate it if you determine it’s not for you. I have a cap fitting for this on November 1st

Recovery from Chemo sounds like a really really bad case of the Flu, usually occurring 2 days following Chemo and can last up to 5 days (plan for 7-10 days of uncertainty), progressively improving over that timeframe. Those are the days that worry me the most. Not being available for the kids. Riley and Jalen will have slightly more understanding but still I worry, and my heart hurts thinking of Camden not understanding why he can’t be with me or why I'm not able to help. I know they will all get the love and hugs from everyone supporting us though, which brings me comfort.

I also of course have to stop nursing, and while I’m thankful this isn’t happening during his first year, I hate that it’s an abrupt end and not on our terms. It is something he does now more for comfort/soothing and never lasts long anymore but of course he is my last so it hits different. I am also so grateful we are done having children. The doctor asked about this as they would have to stop ovulation etc. I can’t imagine having to go through this in addition to having the chance of having kids also held hostage.

I am trying to keep myself busy and have found a need to drastically attempt to declutter and get things organized here before I start treatment. It feels like nesting. I feel like I won’t have energy or the mind frame for anything normal once I start.

As mentioned, my biggest worry of course is the kids. I hate that this will be part of their childhood. I hate that they will have to see me change and I won’t be able to be me for quite some time. I also worry for Mark. It is a lot on him. I know we will have help, but it is so much to carry. If you’re wondering if there’s anything you can do, please check in on him as much as I know you will be checking in on me. 🩷

I have days where I feel sick to my stomach, on the verge of tears thinking about telling the people I love what’s happening, and just in general wondering if this is real life. I was waking up at 3:30AM pretty much daily, whether that be because of Camden or on my own accord, and sleep is then a foreign concept. I lay awake thinking about everything, immediately needing to google questions I have or “add to cart.” Or just let out a good cry. Thankfully I have started to get a little more rest now.

We plan to tell the kids Sunday October 29th. I dread it, but I also think I may feel a sense of relief in having them know. I have several books and hoping we can deliver the message in a way that makes sense for them and feels good for all of us.

Mark and I are rapidly trying to figure out work/possible Paid Leave/Disability etc. I will also have to pause my private practice venture that I recently embarked on. Sigh.

Wednesday November 8th I will need Labs and meet with my doctor in preparation for my first Chemo Cycle, scheduled for Thursday November 9th at 8:40A

I am thanking you all for being there for me even before this starts because I have no doubt you all will be in whatever way that looks like. Just knowing I will have you in my corner is all that I need.

I am thankful to have had the opportunity to communicate to those close to me in the way I had anticipated. It is a difficult conversation but I’m thankful to finally be able to share what is happening with the people I love.

Please feel free to ask me anything. Nothing is off the table.

Until next time…

🫶🏾