Good News & Being Thankful

November 29, 2009, Gualala, CA

We're finally now living in San Jose, after many weeks of apt hunting during the summer, we moved down here in August before Pete started teaching again. We're renting a nice 2-story townhouse less than a mile from Pete's school & Kailee's preschool. We're happy to feel more settled after getting our pallets of boxes shipped from Hawaii, getting our rental furnished, and even having guests over for dinner & even staying overnight (including Pete's brother visiting from S. California). In the beginning, Kailee was asking why no one visits us -- he's such a social guy.

Just a quick update: I had my breast MRI done on Wed., Dec. 2nd at Kaiser in S. San Francisco. The procedure started on time & went smoothly. They injected me with a dye & I had to wear earplugs & earphones too, due to the very loud clicking & humming from the imaging machine. It was a bit difficult to hold perfectly still face down for nearly 1/2 an hour. Luckily I'm not claustrophobic & tried to relax & tune out the noise. My new oncologist at Kaiser Santa Clara is Dr. Ying Zhu, originally from Beijing & also has an MPH from Harvard. She called tonight that my results came in & they found no abnormalities to be concerned about. YAY!!! What a relief. A mammogram done in June also came out negative, but I wasn't confident about mammograms for me. I asked her if I could skip future mammograms & have an ultrasound instead since I have dense breast tissue & wanted to avoid unnecessary radiation. She thinks mammograms are still useful though. I may consider thermography again though.

I've also brought up the issue whether Tamoxifen was working since I haven't been experiencing typical symptoms like hot flashes. She ordered a blood test to see whether I have a gene mutation which would affect how I metabolize Tamoxifen & it came back negative, so I'm still on Tamoxifen on a daily basis (I guess all the Chinese herbs & other supplements I've been taking are helping with side effects too). I also asked her to test my Vit D level, since there's much more information about how it affects your immune system. It came back very low, 16 ng/mL (normal range is 30-100), so now I'm taking a mega-dose of 50,000 IU once a week. Chemo can lower your Vit D level & so can lack of sun exposure. I haven't gotten any flu shots yet -- so maybe I can avoid getting colds/flues this season by enhancing my immune system in various ways. Keeping my fingers crossed that we don't get hit by a nasty bug! Despite Pete's campus being struck by H1N1 & Kailee surrounded by germy classmates, we've been spared thus far.

Yes, I am very thankful for the many positive things in my life. Two of my new neighbors have lost their wives to cancer, one has 2 young children & the other is a paraplegic. A friend recently lost his father to lung cancer (even though he was a non-smoker). I feel for their loss and emptiness in their lives. As a survivor, we hold onto hope that we'll be one of the "lucky ones". My family & friends keeps me grounded and inspired. Thank you for all your good wishes! May this holiday season be filled with love, hope & happiness to one & all.

Beyond the Treatments

June 2009 Nevada-Utah Trip -- celebrating
the end of my treatments with my sisters and their families.

Wow! It's the middle of summer already and it's been over a month since my radiation ended on May 13, 2 days early due to some really uncomfortable skin reaction from the radiation. It was soon after Kailee's 4th birthday (May 5th), that the radiated region started peeling & oozing. I admit, I was feeling quite confident about my treatments & had continued swimming & even did go briefly into the hot tub at the gym and once in the backyard at my father-in-law's home here. Dr. Fields thought it was more the radiation itself since they were focusing the treatments very superficially/externally since I only had my chest wall (& no remaining breast tissue). I stopped going to the gym & couldn't even go on the Rebounder (just bouncing around was sore) -- and even just walking was uncomfortable because I didn't want to swing my arms & rub the area under my armpit. I bought boxes of non-stick gauze to try to deal with it, constantly trying to hold my arm away from my side, even when sleeping. Plus catching a cold (thank goodness not the flu -- so far the flu shot's working this year) made it a less fun experience. The last 5 treatments were to have been focused on a smaller region nearer the scar, but Dr. Fields thought missing 2 days would be OK, more of a judgment call. I did return the following week for a skin check & to give the staff a box of Big Island Candies shortbread cookies. They presented me with a certificate of completion, something similar that the infusion staff also gave me after my chemo. They were all very nice at the radiation clinic -- trying to make the treatments as tolerable as possible.

Marianna Goodwin - Guided Imagery Counselor

I wanted to mention other complementary resources I have been involved with that have been helpful. I occasionally see Marianna on Fridays for guided imagery sessions through the Institute for Health & Healing affiliated with Marin General Hospital. The Institute secured grant funding to offer 3 free sessions of guided imagery & 3 1-hour massages for breast cancer survivors. I'm still going after I was approved for further sessions at a reduced rate of $25/session (normally about $60-90).

Astrid Mackwitz - Art 4 Healing Facilitator

On most Thursdays, I have been attending 3-hour workshops sponsored by the Foundation for Integrative Oncology. The program is housed in a small art studio located in the same building where I go for guided imagery. It's a unique expressive arts therapy program combining a variety of techniques such as visual art (I usually opt for pastels), movement, guided visualization, writing & dialogue. The facilitator is wonderful! She has such a nurturing and warm spirit about her. Unfortunately, she recently lost her mother to breast cancer back in her home country of Switzerland & her father also was recently diagnosed with cancer too -- so this type of work holds very personal meaning for her.

On June 19, I had a follow-up mammogram on my right side, which came out clear. I'm to do an MRI in 6 months, so alternating these tests every 6 months. That same day, I also started taking Tamoxifen, an anti-hormonal pill taken once a day for the next 5 years. So far it's been almost a month & (yay!) no hot flashes so far (a common side effect).

So I'll be celebrating my 41st birthday on the 17th, this coming weekend. Lots to be grateful for. Also, we're close to signing a lease for a rental in San Jose. We'll be moving out of Pete's family's home probably at the beginning of August. I'll be seeing a new oncologist soon and hope to find another great support group & other resources down in Santa Clara County!

The "Zapaterium" Experience

I've been going to the Rohnert Park Cancer Center for the past several weeks --
it's about 30 miles north of San Rafael, about a 40 min. drive.
(aka the "Zapaterium" -- as dubbed by other women in my support group)

The changing room & waiting area for women --
serves as an informal support group setting at times
as we wait to be called for our treatments.

Rodney & Bill, part of a team of radiation therapists/technicians, nice guys!
These fashionable robes we change into always fall open -- the ties never do the job
-- who designs them anyway??

The Siemens linear accelerator --
the blue "pillow" is actually a foam mold used to prop my arms above
my head in the same position during each treatment.

Kailee enjoys making silly faces --
my hair started sprouting a few weeks ago --
I'm catching up to Pete now!

On March 9, I had an appointment to begin planning my radiation sessions -- I was there for about three hours. They did a CT scan to define the treatment fields, also known as ports. They also made a foam mold to keep me in the same position during the treatments. My radiation oncologist, Dr. Mark Fields, used a permanent marker pen to draw over my chest to mark the field. A radiation therapist put four temporary marks (two in the midline of my chest, and one each under the area below my armpits) -- these were to assure constant points for aligning my body. I also saw a nurse who showed me a DVD of what to expect of my treatments & who talked with me about dos & don'ts during my treatments, like not taking excessive anti-oxidants & helpful hints on skin care, types of lotions to use, etc.

Then on March 23, I had a "dry run" to finalize the treatment plan and a radiation therapist put four tiny permanent tatoo dots to replace the temporary ones. I started my 1st treatment on Tues., March 31. Pete happened to be on spring break, so he drove me up there. Poor thing, he had to wait a long time due to them being behind schedule, which I soon find out happens quite often. My appointment was for 12:15pm, but I think I got out of there close to 1:30pm, so we were late to have lunch with Miko, Pete's niece, who lives in Rohnert Park and goes to school at the local community college, taking pre-nursing courses. Had a delicious lunch at a Thai restaurant though, so it was worth the wait.

The rest of the week, unfortunately, the machine broke down, so that extends my treatment schedule for three days. I'm scheduled for 30 sessions, so it's kind of a drag to go up there every day, but I have to think of it as commuting for a "job" of sorts. Unfortunately, Kaiser doesn't have a facility in Marin County, so they contract out to Rohnert Park Cancer Center or to UC-San Francisco. So rather than crossing the Golden Gate Bridge & paying a $5 toll, dealing with city traffic and paying for parking at the UCSF Hospital, I'd rather go up to Sonoma County. Also, to help pass the time, I've been borrowing books on CDs from the library -- some on healing, another by Amy Tan's The Opposite of Fate (a memoir) and Anderson Cooper's Dispatches from the Edge (also a memoir). I may actually miss these drives after my treatments are all done.

I now have nine sessions left -- my how time flies -- my radiation site looks like a really bad sunburn in a large square shape, a little tender & itches a bit, but at least there's no blistering nor bad pain. I've been mainly using a lotion (Miaderm) that was specifically formulated for radiation treaments. It's only available through their website or toll-free number for $24 for a 4 oz. tube (pretty pricey). I also have used a Chinese burn ointment, but it does smell kinda strange and Kailee complains about it, calling it the "stinko medicine". Been swimming and doing "Zumba" cardio dance classes (Latin music based -- quite fun!) to try keep my energy up -- feeling a bit more tired & more headaches actually. The last five sessions or so will be more targeted at my scar site so Monday they'll plan for that. So I'm looking forward to completing these sessions & to celebrate! My older sister Yin Ling's family will be arriving from India on the 15th, then my mom from Hawaii will arrive after Memorial Day. It'll be great to see them again!

The Next Milestone & some tragic news...

My 1st chemo treatment at the Kaiser infusion center
on Dec. 22, 2008 with Kailee & Yin Ling visiting.

As my hair started falling out, I couldn't stand it, so
Pete's sister Jan helped shaved my head soon after my 2nd treatment
-- hmmm, should I stick with a mohawk?

The Buddhist nun look again for the next few months.
My showers now take half the time!

The bald hair thing is the "classic cancer look" for many of us who go through certain chemo treatments. Luckily, it's winter time & I can wear all kinds of hats to cover up without it being too hot. Jan got busy knitting me some caps in different colors so I'd have a variety & I got others from the American cancer society & from a thrift shop. My brother mailed over my old wig (which I never used back in Hawaii, but kept "just in case"), but the elastic is uncomfortable & Pete thinks I look funny with it on. It's a little over 2 weeks after my last treatment & I still have half my eyebrows & most of my lashes, luckily.

Went to the Rohnert Park Cancer Center on Monday for a CT planning session, where they took some images to begin mapping out how the radiation beams will be aimed -- spent about 3 hours there waiting for the radiation oncologist, Dr. Mark Fields, then the technician to customize a foam mold for my upper body to lie in during my treatments, then have images taken, then for a nurse to do some teaching about skin care issues. So now I have these marks across my chest in permanent marker (covered by a clear bandage) which will then be replaced by tatooed ones once the final plan is confirmed during the "dry run", which will happen on Mon., March 23rd, then the actual treatments begin the next day. So for 5 days/week for 6 weeks (total of 30 treatments), I'll be commuting up to the center which is about 30 miles from San Rafael. I think I'll borrow some books on CDs from the library to pass the time driving.

I also began an "art for healing" class on Thursdays from 10:30 am - 1 pm at the Marin General Hospital's Cancer Resource Center. The 1st session was helpful to help process some emotions -- we had some tragic news about the wife of Pete's cousin, Bryan Yamashita. Asa, who was 43 & his wife of 16 years, was stabbed to death on Oahu by a stranger in broad daylight. She was a school teacher and left behind 2 young daughters (4 & 7-years old) adopted from China. It was such upsetting news of how senseless & violent this was. Pete was closest to Bryan of his father's side of the family of first cousins & we got to visit with them a few times while living in Hawaii. Pete's dad will represent our family at a memorial service tonight on Oahu. He left early this morning. We'd like to send the family some books for the children on grief & healing.

This tragedy brought up issues of trying to survive this disease too -- I don't want Kailee to grow up without a mother or for Pete to become a widower. Just like how my mother suddenly became a single parent after my father suffered a deadly stroke in 1981 when we were growing up. It was really tough for us kids to process his death -- we didn't have counseling resources back then and didn't know how to talk about it with each other. We hope Bryan & his family will be strong and overcome this loss. With all of the negative news out there everyday, we certainly must hold onto how life is certainly precious & try to stay positive and be grateful for what we do have.

Here's to a better new year!

Can't believe it's halfway into Feb. 2009 already! I've had some challenges trying to find quality quiet time to update my blog & so much has happened the past few months. We finally put Kailee into a full time preschool (Santa Margarita Children's Center) about 2 1/2 miles from our home at the beginning of this month -- luckily he enjoys it & has adapted well to this new setting.

I had my 1st chemo treatment on Dec. 22 (Taxotere & Cytoxan). I'd need to go in every 3 weeks for a total of four treatments. My sister Yin Ling accompanied me to take notes since there would be a lot of instructions given that day. I had my CD player (yup, I haven't upgraded yet to an Ipod) & some reading with me & some snacks. I still had my port implanted from my 1st chemo treatments back in Hilo, so they won't need to find a vein in my arm. I was there from about 10 am to 3 pm. Pete brought Kailee for a visit too, so that he could better understand why I may be tired at times. I read a book entitled "How to help children through a parent's serious illness" (by Kathleen McCue) & got some ideas for Kailee. I thought even though he's too young to really understand all that's going on with me, he may pick up on my emotions & also needs to know some truths & realities. He understands a bit about my "owee" & why I needed to use an "owee" pillow under my arm after my surgery. They had lunch at a nearby Japanese restaurant, Mikado's (Pete's dad's favorite) & brought me some sushi afterwards -- yum! I was sad to see Yin Ling leave that evening back to India though.

Pete's younger brother has been giving me acupuncture treatments, which I think has helped my energy & nausea. I'm now done with my 3rd chemo treatment & next Monday will be my last. Been taking tons of supplements, trying to swim and go on the rebounder from time to time. Also started pilates training from the Pilates Wellness Institute, which subsidizes pilates personal training & small classes for breast cancer survivors (the founder's sister & she herself are survivors). Soon after my 2nd chemo treatment, my hair started falling off, so Jan buzzed off my short haircut & has also knitted me a bunch of caps. After I got shaved, Kailee told me I look like Daddy. Then I put on my wig (which my brother had mailed over from Hawaii) and Kailee told me I look like Dora (from Dora the Explorer!) -- I just had to crack up after he said both those remarks! I don't like my wig & caps are more comfortable anyway.

Last Saturday, Jan & her kids Miko & Ben watched after Kailee while Pete was at a faculty retreat & I went to a conference at San Francisco General Hospital sponsored by Zero Breast Cancer. It was on young women & preventing breast cancer. Interesting topics on screening issues more appropriate for younger women, genetic issues, and things we should consider to lower the risk for breast cancer since we don't know definitively how to "prevent" it.

Last Wednesday I went to an American Cancer Society workshop "Look Good Feel Better" where the 1st hour a volunteer showed us how to use wig pieces, hats, scarves & other accessories to creatively cover our bald heads. Then the 2nd hour another volunteer, a makeup professional, showed us how to apply makeup -- main topics I was interested in was about ingredients in personal care products & how to recreate my eyebrows, which are fading away right now. Some of the makeup donated by some companies contain preservatives called parabens, which have been linked to breast cancer. Plus there's a long list of synthetic chemicals which hopefully won't give me a reaction. It was a fun & informative workshop -- although I never wear makeup (except for a little lip gloss every once in a while), I'll try some of the products out though -- if anything, maybe I'll look younger!

I'm thankful for...

...lots of things! My surgery on Friday the 21st went fine -- Pete helped to check me in around 12:30, then I changed into a wonderful hospital-issued gown & socks, & went into the pre-op area where I was asked a bunch of questions by several doctors & given my IVs & off to a deep sleep! Woke up totally drowsy & nauseas, and saw Pete's sister Jan visiting after work around 6pm. She ended up waiting around a few more hours until I woke up again after getting more anti-nausea meds. I felt bad about it since Pete was to pick me up & Jan was to meet up w/her boyfriend Clint for dinner. I didn't want to stay overnight, since the last time I was in the recovery room, I had very little rest due to all the comings & goings of the providers & noise from the other patients. Went straight to bed & tried to sleep it off, after having some fruit pie & ice cream (Pete insisted it was good for me) since it's better to have some food with the vicodin. We've had to remind Kailee to be careful around me & not play rough.

On Mon. the 24th, my older sister Yin Ling flew in from India to try to help me out as well as to do some work for her husband's start-up -- I'm so happy she's here until the 23rd. On Tues., the 25th, Dr. Anderson called to say my axillary lymph node surgery (12 nodes removed, originally she wanted to remove 5) results showed no spread & the new margins looked clear too. I was pleasantly surprised the results came back so quickly. I shared the good news with my support group that evening -- it was extra special because the week before, folks wanted the next one to be more celebratory, so Vicki (the coordinator) & other women brought yummy refreshments. It was great having everyone share what they're thankful for in their lives, given our current health challenges.

Then the next day I saw Dr. Anderson to get my drain removed -- it was pretty awkward having this tube attached to my bandage, but at least that's out & I can take a normal shower. So with the clear lymph nodes, that means they would have me do chemo AFTER radiation rather than before. I guess I was confused -- I thought I could forgo chemo if the lymph nodes were OK. I was disheartened & ended up crying in her office, that I just wanted my life to go back to normal ASAP & that chemo would take additional months of treatment & recovery. She was pretty sympathetic about my situation & advised me to try not to do any research nor think too much over Thanksgiving weekend, but Pete told her that would be close to impossible. I swung by the health ed ctr & borrowed a few books "Beat Cancer with Nutrition", "Breast Cancer Husband" & "Help Me Live: 20 things people with cancer want you to know." I'll try to write my thoughts on these books after I'm done reading them (or see if Pete would read the geared book for him).

So I'll get the stitches removed this coming Friday. I'm still pretty sore & can't lift my left arm above my chest. Pete's younger brother gave me an acupuncture treatment a day before my surgery & also did some pain treatment on Sunday, & he'll do another one today. Yes, I certainly have lots to be grateful for during this time!

Life in limbo...

Seems like there's always some kind of wait when dealing with a diagnosis. The original tumor was retested & found to be ER+! So perhaps I could've benefited from Tamoxifen from the beginning & not have to deal with this darn recurrence. Still waiting to hear why they missed it the 1st time around.

So I need to get results from testing more lymph nodes, which will be removed at the same time as my re-excision (which may happen this coming Friday or Monday). The tumor board at Sloan-Kettering last Tuesday recommended the re-excision w/radiation & tamoxifen, but chemo would be entirely up to me since there's no substantial evidence for a clear benefit to having more. Then the Kaiser tumor board which met on Thursday wants my surgeon to take out more lymph nodes to make sure there's no spread there -- so the CT scan wasn't useful for that. At least my breast MRI on the right side is clear. I need to try & do some more research on the issue of more chemo -- if it didn't work the 1st time, why go through the toxic effects again? My surgeon said that if I were her sister, she'd definitely want me to go for the chemo due to my (relatively young) age & the aggressive nature of my recurrence (1.5 cm & returning in about 2 years).

Another issue is whether to stay in San Rafael for a few more months -- need about a month to heal after the surgery & then undergo 6 wks of radiation (& possibly 3 mos. of chemo before that), then move to the San Jose area. It would be ideal to have all my care in this familiar area with support from friends & Pete's family, but also it would be great to have our own space & get settled sooner than later, in that case I'd have to set up a new team of providers & get used to the facilities over there.

I'm thankful Kailee is enjoying his day care -- we're lucky he's an adaptable kid & isn't afraid of new experiences & people. The couple that runs this in-home day care (only a mile from home) are always patient & cheerful. They go for walks outside & even have a van for field trips. I'm glad they're flexible with the variable 2 days/week plan thus far. Kailee doesn't even say good-bye when I leave!