FROM KATRINA:
Two weeks ago today, I had my last chemo treatment with Dan faithfully by my side through it all. I was so happy to be unplugged from the chemo drip and machines, get hugs from the nurses, and walk on out of there.
I will never forget what it took to mentally and physically get to AND through each infusion; to mentally prepare for days before, to wake up at 6 am, leave Ezra sleeping at home with my parents, and sit through a 10-11 hour day of chemo and cold capping. An average day at chemo: check in, wait, get my chemo port cleaned and blood drawn, wait, get examined and cleared by doctor, wait some more, make sure blood labs are cleared for treatment, wait, start first cold cap, then wait some more.
I would usually break down in a few quick tears at some point on Dan’s shoulder during one of these waiting times. In all of this, waiting has been one of the hardest parts. Waiting is when I feel the most helpless. Waiting for biopsy results, waiting for MRI's, waiting for genomic tumor tests, waiting to see what stage I was, waiting to see how the rest of my lymph nodes were. There has been a lot of waiting. During the first moments of each chemo day, l would let the tears come, then I would dig down one more time and find the strength to get in that chemo chair. I realize now that the emotional part of chemo was almost as big as the physical side effects. It was pretty intense being in the chemo ward every two weeks, surrounded by so many people fighting all sorts of cancers. Some were fighting very hard for their lives. I often felt overwhelmed, but also privileged to see a part of life that many don't. I was usually the youngest one there, but I did meet a few women in their twenties and thirties fighting their own battles with breast or ovarian cancer. It was humbling to say the least. I will never forget it.
I had no idea now many different types of chemo exist. A friend told me early on, “However many combinations of cocktails your local bartender can make, that’s how many chemo drugs and combinations there are.” There are many different chemo treatments for the different types of breast cancer. I was given three options.
The regimen I chose is called AC-T. It can be a little more intense than the other options I was presented with, but slightly better overall results. The first four rounds were Adriamycin (derived from red clay from Italy!) and Cytoxan. The first drug was slowly injected into my chemo arm port, while the latter was a slow drip from an IV. These drugs hit me hard and those were the roughest days. The worst hangover combined with the first trimester of pregnancy is the best way to describe it. Mostly nausea, night sweats, heart palpitations, body aches and a crazy sense of smell. I could sometimes walk out of my room and smell a dozen things going on downstairs. It was wild.
The last four chemo treatments were Taxol, (a plant alkaloid from the Pacific Yew tree!) which was administered via a drip that would take about 3 hours. It wasn’t easy, but my body responded less harshly to this drug. It felt more like a flu, followed by a few days of aches. The main pre-med was Benadryl which would allow me to sleep through most of the infusion which made the day a bit easier. I would continue to cold cap for another 4-5 hours while the chemo passed through all the cells in my body. I would also be given steroids before each treatment, so often my body felt tired but awake... like there was a battle going on between all the different different drugs.
Cold capping made chemo days longer, but I am so grateful that it worked. You need to have the cap on for an hour before the chemo starts, and 4-5 hours after the last chemo drips into your body. The frozen gel ice helmet is switched out every 25 minutes for a freshly frozen one from a dry ice cooler. The caps essentially freeze the hair follicles so the chemo doesn’t damage them. Thanks to the cold caps, I've lost only about 25% of my hair so far. I can expect a little more shedding over the next month, but I still have A LOT of hair. My oncologist said it was the most successful cold capping she has ever seen. My brows and lashes have thinned, but they will grow back. It’s amazing the things you are able to let go of when you are fighting for something bigger.
It helped me to know that these drugs were derived from nature. It didn't make it gentle. Nature is fierce. Nature is powerful. Each night before my treatment, I would visualize the bags of medicine and imagine them helping and healing every cell in my body. I wanted to respect the drugs, not be afraid of them. I didn't view them as toxic or poisonous, rather healing. I was grateful that I live in a part of the world where I can walk into a hospital and get the best treatment. I think this helped with my overall experience. I also did acupuncture with the amazing Dr. Mao the day before and after each chemo treatment. I know that his needles and herbs helped my body stay strong. I also drank about a gallon (if not more) of water every day and am now taking supplements and doing saunas to help detox my body. THANK YOU medicine, but now it's time to get out of my body!
I am so grateful for my body throughout this process. It has been so strong and has fought so hard! I have never felt my body take so many hits, but then work so hard to regain it's strength. It's very common to get infections during chemo because your immune system is suppressed. I feel so lucky to have made it through (with lots of hand washing and staying away from crowds) with no infections. We did have one scary trip to the ER because I was having pretty bad chest pains and my doctor was worried about blood clots. That day felt like a loop in this whole rollercoaster ride, but it was also a day when it felt like we all surrendered to “this is just how it is right now”. This is the new normal, at least for right now. My parents were at our house to be with Ezra in under 10 minutes and we were off to the ER. Blood tests, CT scan and an EKG cleared me (so grateful) and I was able to go home after a few hours. Adriamycin can be hard on the heart, so I was also carefully monitored via two echo sonograms and several EKGs to make sure my heart stayed strong throughout. It did. Yay heart.
For all the days where I felt bad, I was pleasantly surprised by how many days I would
feel good. My eight treatments were every other week. Days 1-5 afterwards were the worst, then the "chemo hangover" would lift and I would start to get my strength back. I went on long walks, took Ezra to the park and playdates, did stuff around the house (I never found as much peace in little things like washing the dishes or straightening up toys), and we even got away for some weekend trips. I have never been more grateful for uneventful days when I just feel good.
The thing with chemo is that once you start feeling better, it's time to go back and do it again. Much like preparing for my surgery, I would tap into an inner strength that I never knew I had. It’s been pretty amazing to find parts of myself that I never knew existed. Through all of this, my inner warrior has shown up fiercely, but my heart has also gotten softer. Today I went to yoga (for the first time in seven months!!), and I realized that nobody would be able to tell what I am going through. It’s easy for me to slip in and out of “normal life” because I still have my hair, even though the rest of my body, mind, and spirit just went through surgeries and chemotherapy. I now know more fully than ever that you never know what somebody might be going though.
I am also SO grateful for the women who I have connected with who have also been diagnosed with breast cancer, some this past year, some 25 years ago. One who also had a two year old in tow as she navigated a cancer diagnosis and treatment. I am so grateful for their words of encouragement and advice. I truly feel that I am now in a club, albeit one that I never asked to join. I have learned that every breast cancer diagnosis is so very different (type, grade, stage, risk, etc.) and everyone’s treatment plan is so different. Yet, every one of those women know the feelings, fears and emotions that I have been sorting through. I am forever grateful to these “breasties” and have so much respect for their journeys and the tough choices that we all have to make regarding our treatment.
Chemo is done, but this journey continues. A part of me wants to pop champagne and celebrate, but a part of me is afraid to let my guard down or jinx anything. Yet, I still celebrate the wins and completions in my own way. The final night of chemo, Dan, Ezra and I sat around the table eating the most delicious cantaloup I have ever had and saying "cheers" as we tapped our melon slices and laughed.
This last weekend, my friends (AKA The Wednesday Night Good Vibe Tribe) surprised me with tickets to Robyn and we danced with lots of joy, especially since recently most of our Wednesday night visits have been me resting on the couch. I closed my eyes and danced extra hard for all my cancer sisters in treatment as Robyn played her new song "Human Being."
It was especially poignant because Nina had gotten us tickets for my birthday for the February 22 show. It ended up being the same day as my mastectomy surgery, so needless to say, I had to miss out. But they danced for me as I was recovering in the hospital.
Robyn later added a final LA show and they jumped on getting tickets. I am so grateful that my body was feeling strong and we danced for hours!! It felt like a very full circle moment :)
I am still navigating the emotions, and will be for some time to come. Treatment wise, I will begin five weeks of radiation on August 12. The treatment is every week day, but quick, just about 15 minutes.
I will have surgery in two weeks to get my chemo port removed. My two reconstructive surgeries will be next spring, once my skin has healed and settled from the radiation. It’s still overwhelming, but I’m still just getting through this year one day at a time, one breath at a time.
I had my annual skin check last week and my dermatologist (who I have been seeing since I was 16) asked if I had any recent health changes. Boy, was she in for a shock! She made me promise, promise, promise to tell everyone my story, because many young women don’t realize that this can happen, and unfortunately she is seeing it more and more. Many of my doctors have said the same thing. While I don’t want to scare anyone, I do want to raise awareness. That was one of the main reasons that I have been so open about all of this from the beginning. There were probably 1000 things that I was afraid of pre-diagnosis; breast cancer was not one of them!
I am so happy about the many friends who have told me that they went to get their long overdue mammograms or are finally doing their monthly self-exams. Like my own cancer, 80% of breast cancer diagnosis in women under 40 is self-detected! Click here to learn more. What they call "Young Breast Cancer" treatment comes with its unique set of problems that can include potential fertility loss, chemically induced menopause, and estrogen suppression for years after diagnosis. More to say on all of that at another time.
For now, I am feeling my body start to relax a bit, finding more peaceful moments throughout the day, and sometimes finding myself thinking about things that are NOT related to breast cancer. Next week we will head to Charleston to spend time with Dan's sister and her beautiful family. We are so excited!
Thank you for all of the good vibes that have been sent our way. xoxo