Health Update After 2nd Chemo

[Kailee & me before my 1st chemo treatment]

My health report

It's been a couple months recovering since having my surgery, and I know many of you are concerned about my prognosis so I wanted to send an update. Luckily, I was able to arrange for Kaiser-Hawaii to have me undergo a total mastectomy on my left side w/a sentinel lymph node biopsy on January 11th at Kaiser-San Rafael, just a few miles from my in-law's home (we were staying there for about 2 months while Pete was working as a freshman application reader for UC-Berkeley). The good news was that pre-op tests showed no detectable spread to my liver, lungs or bone. Following the mastectomy, the pathology tests of the 3 lymph nodes removed looked clear and I also had clear margins around the tumor. My initial diagnosis from a biopsy done in Hawaii was ductal carcinoma in situ (DCIS), a stage 0 precancer. However, the final pathology report after my mastectomy revealed a 0.6 cm invasive stage 1 tumor in the surrounding tissue. Although much smaller than the 6 cm of DCIS, this tumor had a "high grade", which actually is unfavorable due to its aggressive nature. Also, the tumor was estrogen receptor negative and only slightly progesterone receptor positive (meaning the tumor was not sensitive to those hormones and these types of tumors tend to be faster growing), so I am not a candidate for hormone therapy. Due to the aggressive nature of my tumor, which seems more typical in younger women, my oncologists in California and in Hawaii recommended chemotherapy due to the chance of microscopic cancer cells migrating elsewhere and that chemotherapy would lessen the likelihood of recurrence. Luckily my nodes were negative, so I don’t need radiation.

So how did I find out?
Since breast cancer more commonly strikes older women, people are shocked to find out that I have it (I’m now 37). My doctors guess it may have been growing for 1-2 years. Maybe pregnancy spurred its growth, but since I’m estrogen-negative, it’s not quite clear about hormones causing it. During my 2nd trimester, I noticed a fairly large, painless lump, but dismissed it as part of breast changes due to my body probably getting ready for lactation. But a month after giving birth to Kailee and breastfeeding, with no changes to the lump, my ob/gyn ordered an ultrasound in mid-June. The radiologist said w/my health background (no close female relatives have breast cancer) & that I was lactating, the lump probably wasn’t suspicious enough, but suggested following up in 6 months. So the week I was to leave for California, I had another ultrasound done on Dec. 19th & the radiologist (a different one) was concerned enough to order a mammogram that same day (boy did I leak all over the equipment since I was still breastfeeding!), then ordered a biopsy the following day. I received my results 2 days later, right before leaving for vacation. Needless to say, since the diagnosis it’s been a crazy past few months, from dealing with trying to learn all about breast cancer, preparing for the surgery, healing from it, then dealing with the chemotherapy & side effects. I’m so grateful for Pete’s family, especially his sister Janice, my sister Yin Ling who happened to be in the Bay Area for work, and our other relatives & friends being so supportive while we were in California. Some of them even babysat Kailee so that I could recover while Pete had to meet his deadlines reading and scoring hundreds of applications. Luckily, Kailee was very sociable & adaptable, so anyone could give him a bottle as well as play with him. However, I did get to visit my sister Yin Ling & her family in the Seattle area for Chinese New Year weekend, and tried to squeeze in as many visits with other friends & relatives when I was more mobile and Pete could drive & help with Kailee. My astrological sign is cancer, so I guess I tend to hold things in, but I had my crying spells with the sudden weaning, the loss of my breast, and the uncertainty of what would happen after the mastectomy. There was no guarantee of a “clean bill of health” despite some of the good news. I didn’t want to read too much into the statistics of women who have a similar diagnosis and their rates of survival and recurrence. Because I wanted to avoid a recurrence and to live fully for my family, doing the chemotherapy would be worth it, kind of like added insurance.

My treatments so far
On March 3rd, I went to the Kaiser-Moanalua Hospital & had a port/catheter implanted in my upper chest and connected to a vein in my neck so that chemotherapy won’t be so hard on the veins in my arm. Kaiser paid for Pete to accompany me (since I had to be sedated for the procedure), so with Kailee we got to spend 2 extra days on Oahu & stayed w/Pete’s dad. (He treated us to our favorite Japanese seafood buffet for dinner, so that was a special bonus to the trip). On March 10th, I started on a pretty aggressive “dose dense” (every 2 weeks vs. the standard 3 weeks) regimen of chemotherapy which includes 4 rounds of Adriamycin with Cytoxan, then 4 rounds of Taxol. I’m also on monthly Lupron shots to shut down my ovaries to actually protect them from the chemo. There’s a chance I could be pushed into an early & permanent menopause & we’re hoping to have a 2nd child in a few years. I’m also given oral and IV anti-nausea/vomiting medications, so I’m doing OK with eating so far. Plus my oncologist prescribed Neupogen shots which I do at home for 7 days after each round of chemo. They’re to encourage my bone marrow to produce white blood cells, but I got some bad back pain from the last few days of it, a side effect indicating the shots were working. Kaiser values them at $200/shot! Thank goodness I have drug coverage. Now after my 2nd treatment on 3/24, my hair’s falling out like crazy! I was hoping that my good hair genes would protect me from going bald (or “bolo head” as we say here in Hawaii) – but it’ll grow back in time. I had cut it really short before the 1st treatment & am donating my hair to “Locks of Love”, which makes wigs for kids.

Trying to take care of myself
I got in touch with the local American Cancer Society for more information, a wig & some knitted caps, & to join a support group, the “Spirited Survivors.” Hilo is certainly a small town -- my high school history teacher is in it, along with other women who know my mom through her restaurant. I’m the youngest member of about 10 women. I’m also boiling Chinese herbs and taking lots of supplements to help with the side effects & boost my immune system. I had consulted with an acupuncturist in California specializing in oncology patients, so if folks want to know more about what I’m taking, feel free to contact me. I’ve been trying to exercise for about ½ hour a day and taking naps when I’m feeling fatigued. Luckily, Pete (who is still job hunting) is able to help watch Kailee during those times. I treated myself to a massage since starting chemo & I’d like to have more to help with circulation and relaxation. Also bought a bunch of guided imagery CDs to help too.

Staying hopeful
Both Pete & Kailee keep me grounded, and Kailee certainly is a positive distraction because he makes me feel so “in the moment” and keeps me hopeful despite my uncertainties. At almost 11-months, he’s still such a good-natured baby and has started sleeping in his own crib at night (although we wish he’d sleep just a little longer through the night). He’s such a fast crawler, loves eating out, flirting with flight attendants & fellow passengers, and is beginning to understand a few sign language motions. We wish we could’ve visited with more folks when we were in the Bay Area, but maybe next time. There’s so much more on my mind, but I just wanted to express how thankful I am for all the kind thoughts, phone calls, prayers, cards, and flowers that have been sent to me and my family. Although I haven’t been able to respond individually to everyone, I hope that you know I too am thinking of you and that this experience, as it still unfolds, will be a truly learning one.