I decided for my official Cancerversary (February 27th, 2018, day of diagnosis) that I will try and summarize what I have been through in the past year. To say a lot can change in a year is an understatement. It's been crazy, a bit traumatizing, and cathartic to look back at everything I have been through! It has taken me awhile to compile everything precisely for you here, so hope it helps to put things into perspective. The following are all, or at least most, of the things I have gone through in the past 365 days (I have tried to keep things in order from start to finish as much as possible). Here goes!
365 days of breast cancer in review:
I was diagnosed with grade 3 invasive ductal carcinoma of the left breast on 2/27/18, or at least that was the day I got my biopsy results confirming my worst fears. At that point, we knew nothing more about it, just that it was cancer and that I needed to start treatment right away because it was aggressive. Since then, we have learned that my cancer is considered stage 3 because of the size of the tumor and it was confirmed via biopsy to be in at least one of my sentinel lymph nodes. After surgery, it was reclassified as invasive lobular cancer. I am still waiting on further testing to confirm the odd hormone receptor status, ER-, PR+, HER2-. My doctors have been treating me as if I have triple negative breast cancer, since my hormone receptor status is so rare, they aren't quite sure what to do with me;
I quickly realized that statistics are bullshit, at least when they pertain to me personally. I still appreciate them in my studies and when they pertain to a population of people, but when it comes to me, I just don't care what the statistics say. I spent quite a few months in paralyzing fear of stats, and wondering what were my chances of beating this, or it coming back, or it metastasizing, or me dying a miserable death, and then I realized I was giving stats WAY too much power, and it doesn't feel good to do that. I know my chances are not as good as some, and not as bad as others, and for now that is it. I am going to continue to focus on the positive, and do everything in my power to keep cancer at bay, and that is all that matters to me;
I experienced three of the most painful mammograms I have ever experienced-that tumor in there made these last three HURT! One mammogram the day I went in to the breast health center before diagnosis, then one after the biopsy to make sure the little seed they planted in there was placed correctly, then another one the day of my mastectomy to make sure the radioactive marker was placed correctly (these are the last mammograms I will ever have because now I have foobs (fake boobs) and mammograms aren't recommended any longer);
I underwent two core needle biopsies (one in the tumor in my left breast and one in a sentinel lymph node on my left side- under my armpit)- Word of wisdom, don't look at the needle they use, it is HUGE, and makes a very loud clicking sound. Luckily the doctor warned me about the sound or I would have jumped! And, they numb the area so it just feels uncomfortable, but not unbearably painful. The lymph node biopsy was the worst, I could feel it all the way down my arm and it made my fingers tingle each time a sample was taken;
Two breast MRIs- one the week after diagnosis to see how extensive the cancer was and to get a baseline before starting chemotherapy, the second one after finishing neoadjuvant chemotherapy and right before having surgery to check my tumor's response to the chemo. It was a good response, not complete, but good;
One PET scan (radioactive much?)- I had a PET scan the week before starting chemotherapy to make sure the cancer had not spread anywhere outside of my breast and immediate lymph node area. The cancer had not spread outside of the breast and lymph node regions;
I think I have had three chest X-Rays now- one before starting chemotherapy to make sure my heart and lungs looked good, one at the NIH as part of the admission process for the clinical study I am a part of, and one when I was hospitalized recently to make sure I didn't have any infectious processes in my lungs or heart-there may have been another one in there but I can't recall at this point. I have been told the X-Rays have all been normal;
Two EKGs- one before my port placement surgery, and one at the NIH before my stomach mapping procedure. They were both normal;
One Echocardiogram- prior to the start of chemotherapy they take a baseline Echo to make sure your heart is functioning well, then if the chemo effects your heart, they can compare a new Echo to the baseline one. Mine looked fine and my heart has continued to beat normally on chemo-knock on wood;
One smart port placement procedure- Literally the most painful thing of the whole year. I don't feel like the doctors prepare you enough for this procedure. It was a simple outpatient procedure, but they send you home and your chest is numb from the lidocaine or whatever they use to numb it, but that night I distinctly remember waking up to a sharp and burning pain that made it so I couldn't move and I wanted to scream but my lungs didn't seem to work either! It was horrible and they gave me no meds for the pain so I tried ibuprofen and extra strength Tylenol and it didn't even touch it. If I had to do it again, I would ask for pain meds and take them before going to bed as a preventative;
One chemotherapy teaching class- taught Andy and I all about the IV chemotherapy process and what to expect. I will never forget the woman who was in the class with us. She had this terrified look on her face and as Andy and I were asking all these technical questions, she zoned out and looked like she could pass out at any moment. I hope she is doing well;
Two therapy sessions with my cancer social worker (she graduated me stating I was handling everything really well-umm....ok?!);
A SHIT TON of medical paperwork;
One wig fitting (found out I hate wigs, so I'm glad I didn't spend a fortune on one);
Four rounds of IV Andrymican/Cytoxin (AC) chemotherapy (AKA the red devil)- totaling eight weeks (each round was dose dense AC followed by two weeks of recovery until the next infusion)- to this day, every time I see a drink or something that is bright red in color, I get a little nauseous;
Lost all of the hair on my body, again, I don't feel like they prepare you for this. I didn't realize I would loose my eyebrows, eyelashes, nose hairs, arms hairs, EVERTHING;
Learned of my CDH1 genetic mutation, still trying to wrap my brain around this one;
Had four Neulasta injections in my stomach to boost white blood cell production the day after each AC infusion- man those shots are EXPENSIVE, but worked to make it so I could continue with the infusions without having to have blood transfusions or anything;
Twelve rounds of IV Taxol chemotherapy-totaling twelve weeks (each round was an infusion followed by one week of recovery);
Went through chemopause (chemo induced menopause);
Was put into medically induced menopause for the foreseeable future (Lupron injections monthly);
Got an attorney, talked about important life decisions, completed a living will and healthcare directive (very empowering experience overall. When do you get the chance talk to loved ones about death and decisions surrounding it openly and honestly? Even though it was uncomfortable and difficult, I would highly recommend it);
Had bilateral mastectomy surgery with sentinel lymph node biopsy and immediate reconstruction with silicone implants (pre-pectoral). Luckily everything went really well, both sentinel lymph nodes tested negative for active cancer cells at the time of surgery, so I didn't have to have any more removed. Implants went in without a hitch;
Had the drains pulled after about a week. What a weird feeling to have tubes pulled from inside your body, luckily it didn't hurt;
Seven cycles of oral Xeloda chemotherapy following surgery (first two rounds were fourteen days of pills followed by seven days off, last five rounds were five days of pills, two days off, five days of pills, followed by nine days off- switched dosing to help with side effects). I may or may not complete an 8th cycle. At this point I am pretty sick of chemotherapy, but I definitely want to give it all I've got since I have come this far;
Regrew all of the hair on my body;
Lost my eyelashes and eyebrows twice. Apparently the life cycle of eyebrows and eyelashes is about 3 months. You don't normally notice them shedding because they don't all shed at the same time. But, for someone who grows them all back at once after chemo, they all have the same life cycle and most of them fall out again about 3 months later. I am told this only happens once or twice, so fingers crossed I don't loose them for a third time;
Joined a clinical study at the National Institute of Health (NIH) for my CDH1 mutation;
Went to the NIH and underwent admissions testing and ninety-two stomach biopsies during the stomach mapping and endoscopy procedure;
Became a blogger, and guest blogger;
Joined the Firefly Sisterhood and have a mentor whom I meet with regularly;
Learned that breast cancer often causes women to gain weight! WHAT?! I thought with a cancer diagnosis, at least I could shed some unwanted pounds, but nope! Luckily, I have only gained about 7 pounds in total, but geeze, can't a girl catch a break?;
Learned I have signet ring carcinoma cells in my stomach and will definitely need to have a total gastrectomy sooner rather than later;
Took a road trip out to NIH, because we had to cancel at least 4 trips this year and I wasn't about to pass up an opportunity to at least see some new parts of the country;
Became a breast cancer and CDH1, hereditary diffuse gastric cancer expert;
Gained new friendships, rekindled old friendships, grew closer to friends and family, and learned who I can really count on;
Learned that when someone offers to do something for you, let them do it. It not only helps me out in the long run, but it helps them feel better too;
Learned that tears are not a sign of weakness, but of pure honest emotion. I guess I had to learn this one the hard way because with all this menopause going on, I can cry at the drop of a hat. The other day I cried because I saw a man walk by with his dog that only had three legs. I literally couldn't stop crying;
I know I am probably missing some stuff here, but this is a good review for now. I have a couple of other posts planned to sum up my experiences in pictures, and to go over in more detail my emotions over the past year, but I will get to those another day.
Thank you to all of you, and for your continued support and love. I have so much planned for the next 365 days, and I hope you will continue to follow me as I navigate the challenges ahead. Although I wish I could be done and move on from all of this and never look back, realistically, I know that will never be possible. Cancer has changed me. I am still deciding how to utilize this change, but I am confident I can make a positive impact in this world in one way or another. Stay tuned.
Take great care,
Kate
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