I’ve moved my blog to: http://theperfectboobs.blogspot.com/
Better interface and more interactive.
I am exhausted today. We are in Pacific Grove visiting more family and the kids are having so much fun. Around 9:30 I laid down to rest with Sofia. JM kissed us good night. Anabelle hopped into the bed and said, “mom, you’re not feeling good right now so I’ll stay with you and read you a story, ok?” Anabelle stayed for 20 minutes and read me two stories as I cuddled with Sofia who was falling asleep to her sister’s stories. I am blessed.
Tuesday, May 29: ”Good morning, its 5:30 am on Tuesday. Today is partly cloudy” sang the voice along to the soothing rhythmic musical chords from the UNIQLO iPhone alarm clock app.
"Partly cloudy," ugh. Was this an omen of what was to come on the first day of chemo?
We got ready, and headed to Stanford Hospital where I was scheduled for an echocardiogram at 7AM. The day before, JM had walked the path from the parking lot to the echo lab. Four-and-a-half minutes. He wanted me to get as much sleep as I could and wanted to know exactly how much time he had before he had to wake me. The hospital was bustling already and we navigated our way through the maze of long hallways and escalators to the in-patient echo lab. Each turn into a new corridor added another level of anxiety. The doctors needed a baseline status of my healthy heart for reference to look back on. Chemo can negatively effect heart function so here we go. I feel healthy now. If someone told me I had cancer, I would not believe them. Pictures from some machines and some biopsies said so though. I’m in great shape. Up until four weeks ago, I was training twice a week and getting bikini ready for my brother-in-laws wedding in Hawaii. I was feeling great. After two kids , I started feeling like I FINALLY was getting my pre-baby body back. Now I am in a hospital gown, getting an ultrasound of my heart for chemo. Another bitch slap courtesy of breast cancer.
After the Echo, we walked to the lab to get my blood drawn from my new medi-port. I was scared out of my mind. Four days ago, I had this thing implanted. I had been walking around like a robot because I was so sore. I couldn’t turn my neck or even put on a shirt without help. I couldn’t even ride in the car without feeling like I was going to vomit. Now the nurse was going to stab me in the chest with a needle to access it? No f-ing way. I had to ask her to get JM because I was so scared; I honestly can’t remember the last time I was that scared. The nurse was very nice and she was trying to be as gentle as possible but It hurt like hell. ”F*ck, that was awful. I’ll get used to it and hopefully it will be better next week, and better the week after that, and better the week after that…”
After our meeting with the Oncologist and her nurse we were off to the “Infusion Center” across the street. It was the same building where I got the medi-port implanted. If somebody blindfolded you, dropped you off in the lobby and then took the blindfold off, you would open your eyes and think you were in a Nordstroms. There’s an automatic piano playing music, the building is brand new and, I know it’s dumb, but it’s sort of comforting to be getting treatment in a place that has such a polished presentation. If they care about ambiance this much, they must care about the science and medicine even more, right?. As I walked into the Infusion center I saw one other young person, but most were older. Many of them had masks on and looked frail and sick. It freaked me out…am I going to look like this in 3 months or 4 weeks too? It was all too real now. Here I go…no turning back now, right?
Chemo went as well as it could have gone. I was actually asleep during most of the infusion. Part of the pre-meds they gave me included Benadryl, which completely knocked me out. The only thing I remember is being woken up to confirm my name and birthday by the nurse wearing a plastic robe carrying the Cytoxan in a bag with a yellow and black hazard sign.
Wednesday, May 30: I felt tired, but fine after the chemo treatment but woke up the next morning feeling extremely nauseous and couldn’t get out of bed until close to 1pm.
My chemo recipe is as follows: Cytoxan and Herceptin once a week for 12 weeks then FEC + Herceptin (Flurouracil, Epirubicin and Cyclophosphamide) every 3 week for another 12 weeks. My Oncologist tells me the first 12 weeks will be easier than my last 12 weeks; I’ll let you know if I agree with her. :)
JM’s parents brought the girls to the hotel today so we got to spend the afternoon with them. Anabelle got to swim with JM and I got to lounge pool-side with Sofia. When we were back in the room, Anabelle and I were in the bathroom and she asked me, “Mom, are you going to be ok?” I replied, “Yup. I sure am, so I don’t want you to worry, ok?” To which she responded, “OK, if you say so mom.” It is heartbreaking to hear my 4-year old worrying about me. I’d like to think that I am shielding her enough from this that she doesn’t have to worry about me, but I guess that’s impossible.
Yesterday we also got news that I am in fact a carrier of the BRCA2 gene mutation that caused this breast cancer. My chances of having this gene mutation was less than 10% according to the geneticist. My chances of getting breast cancer as a young 32 year old Asian woman was probably less than 10% also…so maybe I need to go out and buy a lotto ticket? Anyway, what does it mean to have this gene mutation? A few things: 1. I have an increased chance of developing breast cancer in my left breast so I’ll probably get a double mastectomy vs. a single 2. I have a 70% chance of developing Ovarian cancer…so not a matter of whether I’ll get it, but when. SO, I’ll have to get my ovaries removed at some point before I’m 40 to prevent Ovarian cancer. 3. probably the worst part: I may have passed it onto my girls. it does not put them at higher risk for any childhood cancers, but they do need to be screened for breast cancer starting in their early 20’s. My hope is that by then, there will be so many more advancements in medicine that this won’t be a big deal… 4. My parents need to get tested to see if they passed it onto me or if I somehow miraculously created this gene mutation all on my own (yay, me), and 5. if my parents are carriers, my sister and my brother will have to get tested.
Yes, it’s true. Chemo sucks and it will only get worse. It gets better only after it’s over. Which will be in six months for me, just in time for Christmas. Not a bad present. But, hey, we get to actually sleep with our girls starting tomorrow which I am sooo excited about!! Woo-hoo!!!
Our last family photo in front of our house in Seattle! :(
On the eve of my first chemo treatment, I’m freaking out about all the unknowns of tomorrow but am trying to stay positive.
Seeing the girls play and having fun with the cousins this past week have been amazing and makes me feel like we made the right decision, but leaving them at night to go back to the hotel is heartbreaking.
I know that kids are more resilient than we adults are, but what am I doing to my kids? We move them to California, move them between my sister and JM’s sister’s houses, take them away from home and the routine they were all too familiar with and get cancer?
It will get better. It will get better. It will get better.
Each day we know more and are less scared and each day, staring with tomorrow I will get better and will be a better mom and person for going through this.
Yes, I admit it. I am a wimp. I hate pain. And right now all I am experiencing is pain. Yesterday I got my medi-port (porta-cath) implanted…and let me tell you, the thought of having this sh*t in me for the next year makes me want to quit now. The crappier part of this is that this is suppose to be the easy part. The part that’s no big deal. Great…if this is the easy part, I’m totally screwed.
I’ve had this thing for a whole 24 hours and I’m ready to part with it.
The highlight of today was seeing my girls. I miss them like crazy. I hadn’t seen them since Thursday night. I feel like a crappy mom; not being able to handle this and be a mom at the same time. I wish I were one of those Super Moms, but I guess I wasn’t born with those powers. Hopefully, I’ll feel up to seeing them again tomorrow.
I miss our mundane routine of going to work, taking our girls to day care, coming home, making dinner, making lunch for the next day, bathing, reading stories, putting the girls to sleep and having our occasional disagreements. I don’t think I’ll ever complain about having a boring life after this. I’ll take boring any day over this cancer crap.
Between May 14th and May 18th we got three opinions on treatment: Swedish, Seattle Cancer Care Alliance (SCCA) and Stanford Hospital. We knew we didn’t have the luxury to sit and wait to make a decision on treatment, so we gave ourselves the weekend to decide on treatment.
The weekend was excruciating. In the back on my mind, I knew in my gut from the moment we left SCCA that Stanford was the best choice for me strictly from a treatment standpoint. But I had my parents, Hiro and Hilary (my brother and his fiance), friends, our house that we loved…and the girls had their friends too. Not to mention the massive amount of coordination and effort it would require to move our entire life to SF in less than a week.
That Friday, my parents picked our girls up from school and brought them back to our house; we were at SCCA from 11 to 5:30 meeting with the tumor board and couldn’t leave in time to pick them up. I sat down with JM and my parents and started talking to them about all my reasons to stay in Seattle with SCCA or go to Stanford. My dad said to me, “…so it sounds like you are pretty much set on moving to SF and going to Stanford?” My response, “…I don’t think so. I haven’t decided yet.” I was so torn. I did NOT want to leave and was trying to convince myself that staying made sense when I knew it didn’t.
I felt a massive amount of guilt leaving Seattle. I have two kids and the thought of one of them being sick and then announcing that she is leaving me, their mom, was heart breaking. I didn’t want anyone to take my decision to leave Seattle personally and I didn’t want to hurt anyone’s feelings. I felt like I was abandoning my family in Seattle, especially my parents. It was obvious that this internal conflict I was having was frustrating JM, but he was good about containing his feelings and telling me to be selfish and make the decision that felt right for me; this decision was harder than I thought it would be.
Monday, May 21st: We decided to move the entire family (back) to the bay area after living in Seattle for over 5 years to get treatment at Stanford Hospital.
This was both a sad and happy decision. Sad because of what we leave behind in Seattle but happy for what we gain: my sister and her family, JM’s three sisters and their families and the girls have all their cousins. As important as it is for my girls to ‘experience’ this with me, I want them to have outlets and opportunities to have fun and forget about the fact that their mom has cancer.
I called Stanford on Monday morning and was scheduled for my Brain MRI and medi-cath implant for Friday, May 25th.
Among other things to do before our move, an important thing on my TO DO list was getting a wig made from my hair at Anton’s Hair (http://www.antonshair.com) in Bellevue, WA. I saw Kurt (he’s the son on Anton and has been making custom wigs for cancer patients for 20 years) on Tuesday morning and he gave me a guideline for getting my hair cut: divide the hair in 16 sections and section off with pony tails.
I went to my wonderful hairdresser, Lauryn at Intermezzo (http://www.intermezzosalon.com/) in Queen Anne - who as a side note is awesome. I explained my situation to her and she moved around her schedule to accomodate me so I was able to cut my hair after work with my kids and JM. I was afraid that somehow she would treat me differently when I saw her, but she didn’t. She greeted me with a big smile and a hug and offered me a glass of wine and we laughed about bad TV; this is exactly what I needed.
The first lock that Lauryn cut off, I teared up, but the instant i saw my girls’ faces I knew I couldn’t cry so i held it in and pretended to LOVE my nee hair My hair was well below my shoulder blades. Ironically, I was growing it out to donate to the Lock of Love in July after my brother-in-law’s wedding in June. But now here I was cutting it off to make a wig for myself.
Losing my hair seems like such a superficial thing; it’s just hair, right? But really, it’s a big deal. For me, I wanted to look and feel ‘normal’ for as long as possible. Getting a cute pixie cut was a good transition to losing all of my hair. Having had long hair for years, it’s hard for me to feel like a woman or feel attractive with super short hair. Somehow (stupidly) I associate my long hair with being attractive and being a woman. Now that I don’t have my long hair, it’s hard for me to feel that way. For as many times JM said I look cute and that he liked my hair and no matter how many other people say my hair looked good, I miss my long hair and wish I didn’t have to have this hair cut. It’s about perspective though and I have to remember that it IS just hair and that it WILL grow back.
That’s me getting my hair cut with my girls:
And here’s me after with Sofia and Lauryn rockin’ my pixie cut:
I delivered the hair in 16 zip lock bags to Kurt at Anton’s on Wednesday afternoon where he made a scalp molding of my head with saran-wrap and clear tape. He said my wig would be finished by Friday:
Sunday, April 30th: I had just hopped in bed to join my husband. He had made the bed just a few minutes before and the sheets had just come out of the dryer. Aaahhh… As I laid there basking in the coziness of it all, I remembered that I hadn’t done a self-breast exam in over a month. Its something I try to do regularly but such a simple thing is so easily lost in the routine; work, raising two kids (Anabelle 4 and Sofia 20 months) and sometimes raising my husband ;) (JM). What the heck is this? I found a small lump on my right breast. I told JM. Naturally we googled and WebMD-ed all the things we thought it would be and thought with my age, family history and health it had to be a benign cyst. He said not to worry about it and reassured me that he thought it was nothing. The next morning, I was able to get an appointment with the on call OB-GYN. She confirmed what we had thought, but as protocol called for, sent me for imaging: Mammogram and Ultrasound at the Swedish Breast Care Center.
Tuesday, May 1st: I decided I would go to this appointment alone since I “knew” it wasn’t anything more than some benign cyst. “No need to make it a bigger deal than it is.” I arrived at the Swedish Breast Care Center and quickly realized I was the youngest woman in the room by a good 10 years. This made me feel better. The odds were with me. I was escorted into the changing room, then to another more private waiting room, then was finally called in for my mammogram. I guess it never really registered with me when my mom would talk about how painful mammograms were. Let me just say that I never knew my boobs could be squeezed that thin! After the mammogram, the tech escorted me back to the waiting room for the ultrasound. The ultrasound was performed by a Radiologists and that’s when I first felt like this could be bigger than what we had initially thought. He said the lump looked ‘suspicious’ and so did the lymph node under my armpit, additionally there were some areas of ‘suspicious’ calcification. He recommended I have the lump and the node biopsied so we went ahead and took care of it right then and there. According to him, each of the three findings are normal occurrences when found by themselves. When they are found all together its a little more precarious. ”50/50” he says. Results of the biopsy were expected back in about 3 business days, which took us out to Friday or Monday. That night, we called our radiation-oncologist friend. He said the same thing, “50/50. But I found something on my tongue recently that I was certain was cancer and it turned out to be nothing.” He didn’t want us to work ourselves up because you never know until you know.
Thursday, May 3rd: JM, the girls and I had a trip to San Francisco planned for months. I was happy to be away for the weekend and try to forget about the biopsies. Travelling with the kids and car seats is always a little bit more difficult so JM had left Sofia and me at the airport while he and Anabelle picked up the rental car. When they came back, he loaded the car, installed the car seats and we set off to Marin to visit my sister-in-law’s family. “The doctor called. He said its malignant.” The instant I said it out loud myself is when it hit me. I started crying. ”They have a scale for how they rate the aggressiveness of the tumor. Mine is a 9; the most aggressive.” Tears started streaming down from behind his sunglasses. ”Its ok. We’re going to be OK,” he comforted me as I read the uncertainty in his body language. This is when Anabelle sensed something was wrong. ”Why are you so sad Mommy?” I couldn’t explain this. How do you explain this!? I didn’t even understand it. I just told her that I missed her and played it off. She sensed something was off. She smiled at me in her attempt to make me feel better. It sort of worked.
That first night was unsettling and scary. We didn’t know what it meant to have breast cancer and how our lives were going to change from it. Did I need to worry about my kids having to grow up without their mom?
The weeks to follow were filled with more tests and doctor’s appointments than I have ever had in my entire life!
We gradually told our family first, and then friends in person as we saw them in San Francisco and over the phone when we had no choice. I can’t imagine going through this without our family and friends.
As we started getting test results back from the MRI, PET Scan and blood work we were encourage and empowered. The cancer had only spread to the lymph nodes under my right arm pit but had not metasticised to anywhere else.
Diagnosis: Stage II Breast Cancer. Cure rate: great. Attitude: positive.
My feeling from the moment I was told I have cancer was to try to keep life as ‘normal’ as possible. I felt like the instant I allowed cancer to change the way I lived on a day-to-day basis is the day I started letting it win, which I wasn’t ready to do.
I am a survivor and this is my diary.