Having kids before you have cancer is a true blessing. When you have chemo, it damages your reproductive organs and possibly your ability to have kids in the future so the fact that we knew with 100% certainty that we were done after Sofia is a true blessing.
Being a mom and having cancer DOES come with his challenges though. Like, what do you say to your kids? My kids are 4 and 21 months; how do you communicate such a big life event to such young kids?
We told our girls while having dinner one night when we were still in Seattle. The conversation was brief and went something like this:
Me: So girls, your dad and I want to talk to you about why mom has been going to the hospital so much lately.
Anabelle: ok.
JM: Girls, your mom is sick but is going to be fine. She has something called cancer but they have good medicine that is going to make her feel better so you guys don't have to worry.
Me: Yup! Mom is going to be just fine. It's just going to take some time and I might be tired but soon enough I'll be all better.
Anabelle: ok. So can we talk about how my day was now?
We decided to drop the conversation and not harp on it or talk more about it since Anabelle had very clearly communicated to us that she had had enough. But the other night when I was laying down after my treatment Anabelle asked me, "Mom, why do u have to get medicine all the time?" I responded by reminding her that I have cancer and the only way to get better is by getting lots of medicine.
It makes me wonder if I'm doing this whole 'mom with cancer' gig the way it's supposed to be done. We have an appointment with a family therapist at Stanford who specialized in helping cancer patients but that's not until August. As with every parenting issue, I know there's no one way or perfect way but I hope, hope, hope that I'm not messing up my kids by saying too much or too little.
On Friday, we met with the Associate Director of the Stanford Clinical Cancer Genetics Program about my BRCA2 gene mutation. We got more information on what it means to have this mutation. The highlights: double mastectomy is an option, not a MUST; ovaries need to be removed at age 40 to prevent ovarian cancer; there is a 50/50 chance I passed this mutation to the girls; and if they had to guess, I most likely got this gene from my dad's side. My dad's family is a predominantly male family and their guess is that the gene mutation has been hidden through the generations. For an adult male, carrying the BRCA 2 gene mutation only slightly increases risks of certain cancers, so it's not necessary for my brother to get tested until he wants to have kids. Both my parents and my sister are being tested so we have a full picture of who has this mutation in a few weeks.
One amazing thing we learned today is that if we wanted to have another baby we can ensure with 100% certainty that the new baby will not have this gene mutation. It's called pre-implantation genetic diagnosis. They would take my eggs and screen them for the gene mutation, toss the eggs with the mutation and implant only the healthy eggs with the healthy sperm. Pretty amazing, huh? The good thing about this gene mutation is that it cannot skip a generation; meaning if I didn't pass it onto my girls, that's the end of the line! I only wish I had known about it before we had kids, but that's a moot point now.
My girls have 20 years before they have to worry about whether they inherited the mutation. I pray they didn't inherit it, but if they did my hope is research and development on breast and ovarian cancers and BRCA gene mutation carriers will have advanced so much that it will be only a minor issue for them to deal with. Knowing how far we've come since 1992, I have faith that we'll make great strides in the next two decades.
Wednesday, June 27, 2012
Tuesday, June 26, 2012
Back to reality - week 5
We had an amazing time in Hawaii. The wedding was beautiful and lots of fun. We got back on Sunday night and I had my 4th infusion today.
Last week I was scheduled for a treatment on Monday (one day earlier than usual) but my Oncologist decided that because my white blood cell count was too low and because I was getting such great results so far, with me going to Hawaii the next day, she didn't want to risk me getting sick. The upside; I had a tremendous amount of energy in Hawaii. The downside; a double-dose of Herceptin today.
My hair started falling out on Thursday while we were in Hawaii; it was between weeks 4 and 5. Wherever I go, I leave behind my hair. It's upsetting to see but just like JM says, I have to remember that this is temporary and truly a small price to pay as a side effect to chemo working so well.
The port feels a thousand times better now and I'm glad I got it. A month ago I regretted the decision a million times over, but I now understand why it's so much better to have it. The topical lidocaine I put on about an hour before the access is put it helps a lot, and I barely even notice its there on a day-to-day basis.
I'm contemplating whether to go to a breast cancer support group. Do I need it? Do I want it? Do I really want to be surrounded by other women who are going through this and hear about their problems? I don't know. What will I say? What do I have to share with these women?
I thought chemo would be a lot more social than it is. It's actually very solitary. Maybe it's because I haven't been going at the same time every week; this will change starting next week. :) In the movies, you always see patients getting chemo in big comfy chairs sitting next to each other and chatting. At Stanford, most patients draw their privacy curtain and keep to themselves. I both like and dislike this. A part of me wants to make a cancer friend or two who understands what I'm going through. JM has been amazing, but no matter how amazing you are I don't think one can totally comprehend the confusion and frustration of being a cancer patient without actually being or having been one. I also feel awful when I complain to JM about how much this sucks because I know how hard it is for him to be a bystander. He says he wishes it was him and I know how much of an emotional toll this disease is taking out of him.
Hmmmmm, ok. So maybe I just answered my own question about the support group myself. Maybe I'll check it out next week.
The Oncologist said today that she may give me the option of having surgery after this first cycle so I have a break from chemo then finish off the chemo after surgery. It looks like I may be headed towards a complete response (meaning no viable disease) by the midway point of chemo! I see the appeal in breaking the chemo with surgery but also feel like I want to get the chemo over and done with and then deal with the surgery afterward.
Right now the timeline for my recovery looks like this: 7 more weeks of Taxol and Herceptin then another 12 week cycle of FEC and Herceptin. After a few weeks of rest and recovery I'll have a double mastectomy and possible reconstruction right after the mastectomy (there is a good chance I'm not a candidate for this since I have to get radiation. In which case I'll have a delayed reconstruction which comes with some extra steps). Radiation will probably be everyday for
about 6.5 weeks. I'll continue on Herceptin for a total of one year and then move to an oral estrogen blocker called Tamoxifen for 5 years.
How quickly life changes...I never in a million years thought I would be making decisions like this 3 months ago. 3 months ago my biggest problem was not having enough time to go to the gym before Hawaii.
Weddings are always emotional events. When the wedding is someone close to you, it's usually even more emotional. My brother-in-law, JR got married last Friday to Cecile. Everything was beautiful; the bride, the groom, flowers, the venue, everything. Their wedding took me back to our wedding almost 7 years ago. The day I got married I was ecstatic and happy and had no idea that we would have to fight one of our most important battles only 7 years later.
During my father-in-law's toast to the bride and groom he talked about marriage and life having ups and downs and the importance of being there for one another through EVERYTHING. His words hit me hard because I realized that this is the hardest thing JM and I have ever gone through together. I remember the moment the doctor told me I have cancer, the moment I told JM, the moments we told the kids and our families. I remember the moment I stopped being angry and accepted my inevitable fight and the moment I wasn't scared anymore because I knew I was lucky and would survive this disease.
I knew on September 10, 2005 that I made the best decision by choosing to marry JM but on May 3, 2012 when I was diagnosed with cancer, I knew with absolute certainty with my
whole body that I chose the best person to be my partner. I cannot imagine going through this without JM; his kisses, hugs and his constant ability to make me laugh through this entire process has made coping so much easier.
I still have a long road ahead of me, but I will get through it stronger and better than I started...just with less hair. :)
Here's a photo of our family at the wedding:
Last week I was scheduled for a treatment on Monday (one day earlier than usual) but my Oncologist decided that because my white blood cell count was too low and because I was getting such great results so far, with me going to Hawaii the next day, she didn't want to risk me getting sick. The upside; I had a tremendous amount of energy in Hawaii. The downside; a double-dose of Herceptin today.
My hair started falling out on Thursday while we were in Hawaii; it was between weeks 4 and 5. Wherever I go, I leave behind my hair. It's upsetting to see but just like JM says, I have to remember that this is temporary and truly a small price to pay as a side effect to chemo working so well.
The port feels a thousand times better now and I'm glad I got it. A month ago I regretted the decision a million times over, but I now understand why it's so much better to have it. The topical lidocaine I put on about an hour before the access is put it helps a lot, and I barely even notice its there on a day-to-day basis.
I'm contemplating whether to go to a breast cancer support group. Do I need it? Do I want it? Do I really want to be surrounded by other women who are going through this and hear about their problems? I don't know. What will I say? What do I have to share with these women?
I thought chemo would be a lot more social than it is. It's actually very solitary. Maybe it's because I haven't been going at the same time every week; this will change starting next week. :) In the movies, you always see patients getting chemo in big comfy chairs sitting next to each other and chatting. At Stanford, most patients draw their privacy curtain and keep to themselves. I both like and dislike this. A part of me wants to make a cancer friend or two who understands what I'm going through. JM has been amazing, but no matter how amazing you are I don't think one can totally comprehend the confusion and frustration of being a cancer patient without actually being or having been one. I also feel awful when I complain to JM about how much this sucks because I know how hard it is for him to be a bystander. He says he wishes it was him and I know how much of an emotional toll this disease is taking out of him.
Hmmmmm, ok. So maybe I just answered my own question about the support group myself. Maybe I'll check it out next week.
The Oncologist said today that she may give me the option of having surgery after this first cycle so I have a break from chemo then finish off the chemo after surgery. It looks like I may be headed towards a complete response (meaning no viable disease) by the midway point of chemo! I see the appeal in breaking the chemo with surgery but also feel like I want to get the chemo over and done with and then deal with the surgery afterward.
Right now the timeline for my recovery looks like this: 7 more weeks of Taxol and Herceptin then another 12 week cycle of FEC and Herceptin. After a few weeks of rest and recovery I'll have a double mastectomy and possible reconstruction right after the mastectomy (there is a good chance I'm not a candidate for this since I have to get radiation. In which case I'll have a delayed reconstruction which comes with some extra steps). Radiation will probably be everyday for
about 6.5 weeks. I'll continue on Herceptin for a total of one year and then move to an oral estrogen blocker called Tamoxifen for 5 years.
How quickly life changes...I never in a million years thought I would be making decisions like this 3 months ago. 3 months ago my biggest problem was not having enough time to go to the gym before Hawaii.
Weddings are always emotional events. When the wedding is someone close to you, it's usually even more emotional. My brother-in-law, JR got married last Friday to Cecile. Everything was beautiful; the bride, the groom, flowers, the venue, everything. Their wedding took me back to our wedding almost 7 years ago. The day I got married I was ecstatic and happy and had no idea that we would have to fight one of our most important battles only 7 years later.
During my father-in-law's toast to the bride and groom he talked about marriage and life having ups and downs and the importance of being there for one another through EVERYTHING. His words hit me hard because I realized that this is the hardest thing JM and I have ever gone through together. I remember the moment the doctor told me I have cancer, the moment I told JM, the moments we told the kids and our families. I remember the moment I stopped being angry and accepted my inevitable fight and the moment I wasn't scared anymore because I knew I was lucky and would survive this disease.
I knew on September 10, 2005 that I made the best decision by choosing to marry JM but on May 3, 2012 when I was diagnosed with cancer, I knew with absolute certainty with my
whole body that I chose the best person to be my partner. I cannot imagine going through this without JM; his kisses, hugs and his constant ability to make me laugh through this entire process has made coping so much easier.
I still have a long road ahead of me, but I will get through it stronger and better than I started...just with less hair. :)
Here's a photo of our family at the wedding:
Tuesday, June 12, 2012
Kicking cancer's ass
I'm here at the Stanford Infusion Center getting my third chemo treatment. I just saw my Oncology team and some more good news to report: tumor shrank yet again and is now approximately 1cm. Go chemo! Kick that cancer's ass!! The Nurse said this is one of the best results to chemotherapy she's seen in a long time; yay me!
Chemo days are always long. I'm usually at the hospital for about 5-6 hours. First, I go to the Oncology lab and get my port access put in, and my blood drawn. The blood is sent in for a full panel to make sure I'm healthy enough for chemo. I then see my Oncologist and Nurse. They ask me how I'm doing, check my tumor and my lymph nodes to see how they've reacted to chemo, go over my blood test results and answer any questions I have. Once I get sign off from my Oncologist, I'm off to the Infusion center across the street where I sit in a lazy boy recliner for 3-4 hours and get a whole recipe of drugs through my port. Today, we have a Harpist joining us in the Infusion Center; although only for a mere 10 minutes we all got to close our eyes and feel like we were at the symphony instead of getting chemo.
Usually on the second day after chemo, I actually feel the drugs attacking the tumor site. I feel little needle pricks right where the tumor is; the drugs working hard doing their job. It is an amazing feeling.
It is surreal that I have cancer. I still ask why and how, even though I now know I have the BRCA gene mutation I still ask why. I don't believe this is happening until I catch a glimpse of myself in the mirror and remember what I look like. It's hard to stay strong and smile through this crap but having so much support from all our family and friends helps so much.
Next week is JM's brother's wedding in Hawaii. I got the OK to go and also got cleared to get chemo a day early so we can be in Hawaii starting Tuesday. :) I considered not going, but why would I stay at home and feel sorry for myself? Why let cancer win and change my plans? F-you, cancer. I'm going to Hawaii and having fun and playing on the beach with my kids and maybe even having a glass of champagne to toast JR and Cecile. F-you, cancer! F-you!
Chemo days are always long. I'm usually at the hospital for about 5-6 hours. First, I go to the Oncology lab and get my port access put in, and my blood drawn. The blood is sent in for a full panel to make sure I'm healthy enough for chemo. I then see my Oncologist and Nurse. They ask me how I'm doing, check my tumor and my lymph nodes to see how they've reacted to chemo, go over my blood test results and answer any questions I have. Once I get sign off from my Oncologist, I'm off to the Infusion center across the street where I sit in a lazy boy recliner for 3-4 hours and get a whole recipe of drugs through my port. Today, we have a Harpist joining us in the Infusion Center; although only for a mere 10 minutes we all got to close our eyes and feel like we were at the symphony instead of getting chemo.
Usually on the second day after chemo, I actually feel the drugs attacking the tumor site. I feel little needle pricks right where the tumor is; the drugs working hard doing their job. It is an amazing feeling.
It is surreal that I have cancer. I still ask why and how, even though I now know I have the BRCA gene mutation I still ask why. I don't believe this is happening until I catch a glimpse of myself in the mirror and remember what I look like. It's hard to stay strong and smile through this crap but having so much support from all our family and friends helps so much.
Next week is JM's brother's wedding in Hawaii. I got the OK to go and also got cleared to get chemo a day early so we can be in Hawaii starting Tuesday. :) I considered not going, but why would I stay at home and feel sorry for myself? Why let cancer win and change my plans? F-you, cancer. I'm going to Hawaii and having fun and playing on the beach with my kids and maybe even having a glass of champagne to toast JR and Cecile. F-you, cancer! F-you!
Wednesday, June 6, 2012
Done with #2
It's 4am the day after my second treatment. As part of my pre-med recipe I get Decadron, a steroid with insomnia side effects. I'm not sure if that's what's keeping me awake or if it's the excitement of finally not living out of my suitcase.
We got some amazing news at the doctor yesterday. My tumor shrank!! My once 2.7cm tumor is now closer to 1.5cm!! One week of chemo and boom!! AND, the lymph nodes are barely palpable. Chemo is unbelievable. I still have to finish my full 24-week course (JM and I both jokingly asked if this meant we can be done next week :)) but there is something very satisfying about knowing the toxins they're pumping into my body are working the way they should be working.
I don't think I ever fully disclosed my diagnosis so here it is: I am a BRCA 2 carrier, with grade 3, HER2+, ER+ (20%), PR+ (1%) breast cancer in the right breast. Stage IIB. Tumor was sized at 2.7cm with additional malignant calcification about 5cm away in addition to a few malignant lymph nodes with the largest one measuring about 2.2 cm. So what does this all mean? Well, I'm not an Oncologist but this is my basic understanding. Obviously I don't expect anyone to rely on my laymen's understanding of my cancer diagnosis so please talk to your medical professional if you any questions.
HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2, which promotes the growth of cancer cells. A HER2-positive breast cancer essentially means my HER2 receptor is telling my cells to create more HER2 genes causing an over expression of the HER2 protein; making the breast cells grow and divide in an uncontrolled way. HER2 positive cancers tend to be more aggressive and grow faster. ER+ means that my cancer is estrogen receptor positive making them sensitive to estrogen levels. PR+ means it is progesterone receptor positive making them sensitive to progesterone. Grade 3 means I have a high-grade cancer with cells quickly growing in an irregular and disorganized fashion creating new cancer cells.
So the good news (which I already announced earlier in the post): they have an amazingly effective drug that targets HER2+ breast cancer called Herceptin. Grade 3 cancer, although the worst you can have actually responds well to chemo treatment, because the cells are dividing rapidly, which is what the chemo drugs target and kill...same reason why I'll lose my hair in the next week or so.
Alright, I guess I should try to sleep. It's amazing how life changes so quickly. A month and a half ago, I would have been awake by now getting ready to be at work by 6:00.
We got some amazing news at the doctor yesterday. My tumor shrank!! My once 2.7cm tumor is now closer to 1.5cm!! One week of chemo and boom!! AND, the lymph nodes are barely palpable. Chemo is unbelievable. I still have to finish my full 24-week course (JM and I both jokingly asked if this meant we can be done next week :)) but there is something very satisfying about knowing the toxins they're pumping into my body are working the way they should be working.
I don't think I ever fully disclosed my diagnosis so here it is: I am a BRCA 2 carrier, with grade 3, HER2+, ER+ (20%), PR+ (1%) breast cancer in the right breast. Stage IIB. Tumor was sized at 2.7cm with additional malignant calcification about 5cm away in addition to a few malignant lymph nodes with the largest one measuring about 2.2 cm. So what does this all mean? Well, I'm not an Oncologist but this is my basic understanding. Obviously I don't expect anyone to rely on my laymen's understanding of my cancer diagnosis so please talk to your medical professional if you any questions.
HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2, which promotes the growth of cancer cells. A HER2-positive breast cancer essentially means my HER2 receptor is telling my cells to create more HER2 genes causing an over expression of the HER2 protein; making the breast cells grow and divide in an uncontrolled way. HER2 positive cancers tend to be more aggressive and grow faster. ER+ means that my cancer is estrogen receptor positive making them sensitive to estrogen levels. PR+ means it is progesterone receptor positive making them sensitive to progesterone. Grade 3 means I have a high-grade cancer with cells quickly growing in an irregular and disorganized fashion creating new cancer cells.
So the good news (which I already announced earlier in the post): they have an amazingly effective drug that targets HER2+ breast cancer called Herceptin. Grade 3 cancer, although the worst you can have actually responds well to chemo treatment, because the cells are dividing rapidly, which is what the chemo drugs target and kill...same reason why I'll lose my hair in the next week or so.
Alright, I guess I should try to sleep. It's amazing how life changes so quickly. A month and a half ago, I would have been awake by now getting ready to be at work by 6:00.
Monday, June 4, 2012
Control
I wanted to shave my hair, so last night we came back to my sister's house. I wanted my girls to be there, to see their dad shaving their mom's hair, and I wanted my sister to be there too. I also asked Mark (my sister's husband) to document the event; he's an awesome photographer and why not get some amazing photos of this ceremonious event.
I find it liberating to have so little hair and sort of like it. As bad as this sounds, I feel like I can get away with more. (now I just have to figure out what I want to get away with;)) I actually think I like my shaved hair better than my pixie. I feel like I have nothing left to hide behind and the vulnerability is refreshing...as is the breeze on my head. I imagine actually losing what little hair I have left will be traumatic, but we'll cross that bridge when we get there.
Thanks to chemo, I am yet another lucky cancer patient who gets to lose hair. The nurses tell me that it happens 2-3 weeks after I start chemo. It will be 1 week tomorrow. I wanted control over how I lose my hair and wanted to lose as much of it on my own terms and didn't want to wait to see clumps of hair falling out in the shower or on my pillow. I want to keep as much control over my body and my life as I can before the fight in my body between cancer and chemo drugs begin to take its toll. Cancer takes over your life so for a control-freak like me, losing any control makes me crazy.
It was clear that Anabelle and Sofia (and Koby, their cousin) did not like their mom's new hair-do at first. Anabelle asked Sofia if she was scared and told me that she wasn't the biggest fan of my shaved hair. But as resilient as the kids have been with our move, they adjusted quickly to my new look. At lunch today, Anabelle told me, "Mom, I think you look pretty with your new hair," as she and Sofia rubbed my head with delight and laughter.
I find it liberating to have so little hair and sort of like it. As bad as this sounds, I feel like I can get away with more. (now I just have to figure out what I want to get away with;)) I actually think I like my shaved hair better than my pixie. I feel like I have nothing left to hide behind and the vulnerability is refreshing...as is the breeze on my head. I imagine actually losing what little hair I have left will be traumatic, but we'll cross that bridge when we get there.
Thanks to chemo, I am yet another lucky cancer patient who gets to lose hair. The nurses tell me that it happens 2-3 weeks after I start chemo. It will be 1 week tomorrow. I wanted control over how I lose my hair and wanted to lose as much of it on my own terms and didn't want to wait to see clumps of hair falling out in the shower or on my pillow. I want to keep as much control over my body and my life as I can before the fight in my body between cancer and chemo drugs begin to take its toll. Cancer takes over your life so for a control-freak like me, losing any control makes me crazy.
It was clear that Anabelle and Sofia (and Koby, their cousin) did not like their mom's new hair-do at first. Anabelle asked Sofia if she was scared and told me that she wasn't the biggest fan of my shaved hair. But as resilient as the kids have been with our move, they adjusted quickly to my new look. At lunch today, Anabelle told me, "Mom, I think you look pretty with your new hair," as she and Sofia rubbed my head with delight and laughter.
- - - - - - - -
the last moments of my pixie:
yumi prepping my hair
Sofia and me with our unicorn horns:
...and here we go...
i'm having fun
...ewwwww
this is just funny
maybe i should have stopped here...with a bird's nest on my head
...and (drum roll, please) we're done.
my rock, the love of my life and my partner in crime.
Friday, June 1, 2012
Blessed
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.
It just got very real
Tuesday, May 29: ”Good morning, its 5:30 am on Tuesday. Today is partly cloudy” sang the voice along to the soothing melody 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 four times 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 Paclitaxel 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: Paclitaxel (Taxol) 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 an increased chance of developing Ovarian cancer…so, I may 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!!!
I'm a total wimp
Yes, I admit it. I am a wimp. I hate pain. And right now all I am experiencing is pain. Yesterday (May 25th) 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.
Good bye Seattle & Good bye hair
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.
This is me getting my hair cut with my girls:
Me rockin' my new pixie cut with Sofia and Lauryn:
I delivered the hair in 16 zip lock bags to Kurt at Anton’s on Wednesday (5/23) 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 (5/25):
how i got here...
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.
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