Wednesday, August 4, 2010

Certainty

I feel like I've come full circle, yet instead of the fear that paralyzed me three years ago, I am full of positive new energy, drive, hope, and love. The last time I was in Hawaii, it was 2007, and I had just been diagnosed with cancer. XH and I went to Honolulu to celebrate our third wedding anniversary. As I am thinking about it now, there was love but also sadness and uncertainty...about life and where it was going to lead the two of us, especially with a terrifying cancer diagnosis. We visited a Buddhist temple at the suggestion of two friends whom we serendipitously ran into at the airport. Our afternoon with Roshi was a grueling examination and exploration about that which I am most deeply attached to: pain, loss, fear. And during the next three years, I would be faced with seemingly insurmountable challenges that would bring me face-to-face with those attachments. In order to survive, I had to experience pain, loss, and fear...and then let it all go.

Here I am, three years later, in Maui celebrating year one of what I know for certain is going to be a life-long relationship with my soulmate. I am cancer-free and healthy. My illness has let go of me, and I have let go of a lot of the pain that has come upon me throughout my treatment and recovery, my divorce, and the loss of our son in April. I still mourn Veo's death, particularly because this would have been the month he would have been born if he had not had that fatal birth defect. And I sometimes still have those unanswerable questions: did my cancer treatment somehow cause that defect? Was it my fault? But a comforting thought came to me yesterday as I was standing on the balcony in Glendale with Anton: the name of our baby boy, Veo Liam, is an anagram for "I am love." Even though I am a self-professed word nerd, we did not name him with this significance in mind. When I told Anton my realization, we both fell silent, smiled, and hugged each other, and it felt to me that at that moment, Veo had come to us to bring the two of us even closer together.

As I sit here on our first morning in Maui, with Anton still sleeping, I am full of reflection about how I got here. And to me, it all comes down to the fact that there is nothing else like this moment.

Saturday, May 29, 2010

Universe, can you please cut me some slack?

April 15, 2010 was the 2nd anniversary of my bilateral mastectomy. It was also the day that our son, Veo Hieu Liam Worrall-Soriano was born and then died. Veo had a birth defect called anencephaly, which causes the skull to not form and therefore, the baby would never have a chance to survive. I was admitted to Women's hospital to give birth to Veo and to say goodbye. When labour was induced, I felt the familiar pains of childbirth, but with the added pain of knowing that all the dreams we had for Veo would never come true. Each contraction that passed through me was another permanent wound. I knew that before long, we would be able to hold Veo, but only for a little while.

Throughout our stay at Women's, the staff--from the nurses to the social worker to the spiritual counsellor--helped us in every single way they could, and we will always be so thankful for that support. But as we came home, we felt the immense sadness and void fill up the space around us. We spent time together, just the two of us, and we also thought about how we would help Chloe and Mylo deal with the loss of the baby brother they were so excited to have in their lives.

Even though they are only 5 and 6 years old, my children have gone through so much in terms of death and loss and illness, starting with my cancer diagnosis in 2007. When they were 2 and 3 years old, they watched me transform from a healthy young mom who could easily fulfill all their needs into a sick, bald woman who spent a lot of time in bed. They watched me give myself white blood cell booster injections, and they watched me recover from my surgery, with drains hanging out of me. They watched me get better again. Then they endured their father's and my separation, trying to cope with now living between two households and understanding why grown ups behave the way they do. Now this--a baby that they never saw but hugged through my belly, a baby whom they had all these plans to play with, a baby for whom they drew pictures and made up stories--this baby they wanted--he was dead. Why? My heart broke when Chloe asked me, "Mama, can we have a baby that doesn't get sick and die?"

It's been over a month since Veo's birth and death, and we're still feeling the loss. Chloe and Mylo have resumed their lives as usual, but now and then they ask me about Veo. They ask to see the tiny footprints the hospital gave us, they ask to burn some incense for him. The hospital gave us teddy bears to give to the kids, and the funeral home gave us a stuffed elephant--all as reminders of Veo. Every night the kids are with me, they hug those stuffies and remember their brother.

Now, I sit alone in my apartment. The kids are with their dad. Anton is going to be by his mother's side as she takes her final breath. It is quiet, but I'm feeling very unsettled.

Yesterday, I had a check-up with my oncologist. She wants to give me a full-body PET scan to make sure I am truly cancer-free. However, in order for me to have that done, I have to not be pregnant. And now, more than ever, Anton and I really want to have a baby. A fear struck me this morning as I thought about the PET scan: what if it shows I have cancer, and I have to go through chemo or whatever, and then I can never have kids again? I really want to say, forget the PET scan until we have the baby we want so much. But I know--I have to make sure I am good to go.

I fucking hate cancer. It keeps getting in my way.

Why can't we have this life we want so much--to be with Chloe and Mylo and their baby brother/sister, to live quietly and in the service of society? The last three years of my life have been devastation upon devastation. Yes, there has been so much that has gone right. I still have two amazing children, and I am in love with the most amazing man. Why, then, does life keep dishing out all these challenges that make me want to scream?

Wednesday, March 31, 2010

Ups and Downs

Good news: I tested negative for the BRCA-1 and -2 genetic mutations, which nixes my increased risk of ovarian cancer. However, a variant did show up on the results, but it's apparently one with a database so it's being tracked in other patients as well.

Now the other news.

We met with the OB/GYN last week for our monthly check-up. She said she talked to my plastic surgeon, who's insisting on a C-section so that she can assist in the repair to the mesh. That means that I have to have the baby at another hospital than originally planned, which means adding another OB/GYN to the team. Coincidentally, turns out that that doctor is the same one I had when I was pregnant with Mylo. Unfortunately, we later found out that she's on vacation for the whole summer, and our baby is due to be extracted from my shell in August. So now we're being juggled among doctors, but I'm sure it'll work out. I'm thankful that I have a team who's the best in Canada.

Then we were presented with yet another challenge yesterday. I had just pulled into the school parking lot to drop off the kids when I got a call from the OB/GYN's office. They received the results from my serum screening (or Triple Screen, as it's called in the U.S.) and they wanted me to come in to talk about the results. My heart immediately sunk, as I knew from past pregnancies that this test was to check for risk of Down's Syndrome and neural tube defects (most commonly, spina bifida). I calmly took Chloe and Mylo into their classrooms, read a book with Chloe, and rushed off to go home. I contacted my family doctor and told her that I got the call from the OB/GYN, and she responded that she would get the results herself and get back to me. Within an hour, she asked me if I could come in and see her right away. I was struck with the same feeling I had when I got the call to come in and discuss the results of my initial biopsy two and a half years ago.

Anton tried to remain calm, but I knew what was coming. Before she went over the results, she told us that these numbers aren't conclusive, and that the next step would be to get more tests done that would give us more definite answers. Then she gave us the numbers: 1 in 5 chance of neural tube defect, 1 in 25 chance of Down's syndrome. I accepted the news. I nodded my head. I listened as she explained all the numbers and terms to us on the report. She told us about the amniocentesis, which I knew about as well. And then I lost it. She consoled me and sat with us as long as it would take. We went home, exhausted, and it was only noon.

When we got home, we Googled, talked, and cried. I just couldn't believe that this was happening. It's not so much the idea of having an "imperfect" baby that worries me; it's more of the idea that the baby might be born suffering. Neural tube defects are more than just spina bifida. Some cases leave the babies paralysed, mobility challenged, blind or deaf, or can even lead to stillborn deaths. I know--we shouldn't let our minds race before we get more conclusive results, but still, how can we reign all this in?

A couple hours afterward, we went to the OB/GYN to talk to her about the results. She told us what we already knew, and then talked about the amniocentesis and genetic counselling. There was no question--we would do it as soon as possible. Just one problem: the mesh in my abdomen. How would the needle pass through that to get the amniotic fluid? The doctor was confident that the technicians could find a pocket that would allow the needle to pass through, but the idea of someone having to stab me multiple times with that needle before getting the right spot didn't sit well with me. So when I got home, I emailed my plastic surgeon.

This morning, I got my appointment for the detailed ultrasound and the amnio--it's not until the end of next week because Anton and I are off to LA to visit his mother, who is very ill. So it'll be more than two weeks before we know the condition of the vaboose. Also, just as I suspected, the plastic surgeon wants very much to communicate with the people performing the amnio before they just go in there and try to do their thing. I'm happy that I was proactive enough to call her and inform her of the situation so that she could contribute her expertise to the procedure. It's quite difficult and stressful being someone whom medical professionals are not used to dealing with.

Another call I made this morning was to my oncologist. You might wonder why, since this seems to be entirely a prenatal issue. Well, in my desperation to find a scenario that it's actually me who has something wrong, not the baby, I looked up alpha fetoprotein (AFP--the protein that indicates risk of Down's syndrome and neural tube defects), levels and any possible relation to cancer. Sure enough, increased levels occur in men and non-pregnant women when there is presence of liver, stomach, testicular, and ovarian cancer and lymphoma. This is wacky, but I really started praying that I have cancer and that the baby is okay because that would mean I could get treatment and get better, and the baby wouldn't be born with some incurable defect from which s/he would suffer. So I left a message for my oncologist to get back to me so we could see if that's a possibility.

Also, I want to know if my cancer treatment, particular the trial chemo I had, has something to do with this. I was told many times that it's pretty possible that I'd go through early menopause cuz the chemo would fry my reproductive system. Obviously that didn't happen, but perhaps the chemo has been a contributing factor to this situation.

I woke up this morning with the same feeling I had for the first month after I was diagnosed in summer 2007. I wondered if I had been dreaming--that this shocker was some kind of fear that my subconscious was dealing with. But then I saw the copy of the report on the couch, and I knew that it was real.

I ask myself why things keep happening, why just when things seem to be going right, we get another life-changing challenge thrown at us. In my most cynical moments, I think that I'm the universe's favorite joke. In my most spiritual moments, I feel that the universe thinks I can handle it, that if there's anybody to lay these challenges on, it's me. And lucky me--I have a partner who's on the same wavelength as I am in terms of dealing with all this, and I have two kids who show me constantly that there is so much happiness and joy in life. After I told the kids that the baby might be sick, Mylo kept hugging my belly all night, "to hug the baby" as he says. This sounds so co-dependent, but I feel like I'm only as strong as the people around me, and the people around me, including my children, are the strongest. Being strong means being able to cry, and being able to tell those around you that it's okay to cry. Being strong means believing that no matter what, it WILL be okay.

Saturday, March 13, 2010

Something

"I'm sure it's nothing. I'm sure it'll be okay." How many times have I said these words to myself and to those around me when it comes to cancer scares? I'm saying that now. I've been having a consistent pain in my leg for two months now, and my oncologist wants me to get an MRI to get it checked out. I was pretty happy and surprised that she's taking that action because they don't just hand out MRI's to anybody with a leg pain in Canada. But she wants to figure out what's going on with my leg, and this is the best and safest way to do it now, given the pregnancy. Still, I'm sure it's nothing...right?

Anton and I met with the ob-gyn again for our monthly check-up. She got the notes and recommendations from the plastic surgeon who did my TRAM-flap, but she has other ideas about how this pregnancy will progress and how to deliver the baby.
The problem is, none of my doctors have any experience at all with a woman in my situation, who is pregnant after having had a bilateral mastectomy and TRAM-flap reconstruction. So everything that they think about the situation is theoretical. The plastic surgeon believes that since I don't have abdominal muscles, I can't push out a baby and will therefore have to have a C-section, which would require cutting into my mesh. The ob-gyn would rather me have a vaginal birth and use a vacuum to suck out the vaboose, which kinda freaks me out. I know it sounds superficial, but I don't want my baby to have a cone-shaped head (I also know that it won't stay cone-shaped for long, but I can't hold off on taking pictures until the vaboose has a round head again). We meet with the ob-gyn in a couple weeks, so we'll find out more then.

We're off to a young adult cancer survivors retreat today, specifically for couples. It's good to get connected with folks who've gone through similar situations, especially because it's so easy to become isolated. Even though young people are resilient, it's quite difficult to just "get over" cancer. Thankfully, there is this space to talk about what's still there, even when the cancer is gone.

Sunday, February 14, 2010

Our Little Tiger (definitely not Tiger Woods though)

Cancer really amplifies everything in life and makes you think twice about every option. One of the hard questions that was asked during my oncologist visit was how would I feel about potentially giving birth to another child that I might not be around to raise very long. It's probably the question that resounded in my head most of the time during the weeks we spent visiting specialists and gathering as much information as we could about the situation. The fact is that the rate of recurrence of cancer within the first five years of remission for triple negative breast cancer survivors is much higher than for other survivors. But once you make it past the five-year mark, the chance of recurrence plummets dramatically. I'm nearing year two. And I feel awesome. I beat the odds of not being able to conceive; who says I can't beat the odds of living a cancer-free life for the next 70 years?

One huge pro of our situation: we are here in Canada, where I receive top-notch health care from the best medical specialists. I have an art therapist, a lymphatic drainage massage therapist, another registered massage therapist (for my shoulder pain due to the lymphedema), an acupuncturist, an oncologist, a high-risk pregnancy ob-gyn, a plastic surgeon (for my breast reconstruction, who's also going to monitor my pregnancy because of the TRAM flap surgery I had), and other medical resources that ensure that I have the best possible health I can. And the beauty of it all is that I only pay a small amount for all that (mostly for the massage therapy, acupuncture, and counselling, but I get reimbursed for that too), thanks to universal health care. On the health side, I have tons of people looking out for me.

As for the "what if's"...my answer to those devils is that no matter what happens, Baby Worrall Soriano is going to have two parents and two siblings who will always love him/her, and an army of aunties and uncles to guide him/her through this crazy world. We are rich in friends.

We see the ob-gyn this week, and we'll be able to hear the baby's heartbeat. And the week after, it's off to the oncologist to get a check-up on the fight against Monster C. In the meantime, I'll also make appointments with my lymphatic draining massage therapist to help me with my lymphedema, and with my acupuncturist, who luckily for me, is specialized in cancer and fertility!

Happy Year of the Tiger!

Saturday, February 13, 2010

Eye of the Tiger

Sorry, world, for not posting anything in seven months. Lots has been going on. I feel as if a lifetime of stuff has been crammed into a year. On February 11th, it was a year ago that I got my latest reconstruction surgery (ie, saline implants). It's been a year since the break-up of my marriage. So perhaps now is a good time for reflection.

Last April was probably the lowest point of my life ever. I fell into an abyss from the thought of having to rebuild my life yet again. It seemed as if my bad fortune was endless. But as you know, things started looking up when I was featured on Entertainment Tonight Canada. After that, I had a new sense of empowerment and confidence--something I hadn't experienced in years, perhaps even before my cancer diagnosis.

Toward the end of the summer, I made a trip to Los Angeles to be in my friend Irene's wedding. I hadn't been to LA since before my bilateral mastectomy--almost one and a half years. It was great to reconnect with friends and get some southern California sunshine. But something else was written in the stars. Irene's brother, Anton, and I started hanging out, partly because of all the wedding preparations. And we really connected...really REALLY connected. :) It wasn't long before we realized that we were meant to be together (god, this is starting to sound like the ultimate cheesy romantic comedy, but hey, it's the day before Valentine's Day, so deal with it).

In the meantime, my divorce was in full-swing, and with new love shining bright (sorry, I watch Days of Our Lives sometimes, so...you know), I had even more confidence that I could start a more promising life. But one shocker was that I happened to get pregnant. I consulted with my doctors, and I was told that it would be risky for me to carry a pregnancy given my cancer history. I've been in remission for less than two years, and the recommendation is to wait five-years post-treatment to carry a pregnancy. Typically, the hormone surge during a pregnancy would pose a higher risk of recurrence for a breast cancer survivor. However, little research has been done on the particular type of breast cancer I had--triple negative breast cancer--so it was a big question mark for me. Proceeding out of caution and also with the idea that I had to be as healthy as possible and be around for the two kids I already have, with a heavy heart I decided to terminate the pregnancy. It was the hardest decision I've ever had to make in my entire life, and it was in the midst of all else that was going on.

I had an non-hormone IUD inserted during the procedure, as that is the only safe type of birth control for me. A few weeks later, I had an incredible pain in my pelvis. I went to the docs, and it was discovered during an ultrasound to check the placement of the IUD that I had ovarian cysts. They were non-malignant, but the pain I experienced was from one of them rupturing. The recommendation was that I go in for another ultrasound after a few weeks to see if the cysts would resolve themselves.

All along, I went to LA to visit Anton, and he came to Vancouver to visit me. Things were still going relatively smoothly with the divorce, and the kids seemed to be faring quite well with all these changes. So I went back in for another ultrasound in December, and right after that, went back to LA to visit Anton one last time before the holidays. When I returned from LA, I heard several messages from my doctor, asking me to make an appointment and come back in asap. I did so, and I found out that the IUD had been falling out slowly. I asked the doc if it were possible that I'd gotten preggers again, and she told me it was unlikely since the cervix would do its thing in response to the IUD still being there, despite not being in correct position. So I didn't give too much thought to it. I made an appointment to come back in when I returned from Pennsylvania after the holidays to get another IUD inserted.

However, while in PA, I discovered that I was indeed pregnant. Quite a shocker. Talk about going against all odds. I couldn't believe that this was happening again. I'm not a religious person, but I felt somehow that some higher power was trying to tell me something.

When I got back to Vancouver, I let my doctor know the news. It just so happened that I was also having my next six-month appointment with my oncologist. Anton came to Vancouver and went to the appointment with me, and I filled the doc in on what was going on with my body for the past four months (I had noted with some degree of disbelief that I had been pregnant TWICE during several of my friends' pregnancies in recent months). She asked what our decision was, and we had no idea. We wanted more information on my health and our options before making a decision about this pregnancy. So she set up appointments for us with a high-risk ob-gyn, a specialist in a fertility clinic, and I met with my plastic surgeon to ask her about the mechanics of experiencing a pregnancy with a TRAM flap. She also ordered up blood work, ultrasound, and x-ray.

The consensus among the doctors was that the pregnancy shouldn't increase my risk of recurrence because my cancer was hormone receptor-negative (look that up if you wanna know what the means). However, my risk of recurrence is still higher than usual because of the subset of cancer I had, but that's whether I'm pregnant or not. The plastic surgeon told me that I would have to have a c-section because I have no abdominals with which to push out a baby, and that they could just cut through the mesh in my abdomen (god, I'm like a fucking robot). And the fertility doctor told me that my options were very limited should I want to have a baby in the future because the success rate given my history is low. He said that just because I've been getting pregnant, does not mean that I'm fertile...I'm just lucky. And that if I'd been planning on having children in the future, I should go with this one now. Basically, this is a miracle baby.

My ultrasound, x-ray, and bloodwork all came back with positive news that I am cancer-free. So that piece of information was out of the way.

Weighing all this information and all the pros and cons that come with having a baby, Anton and I decided, after much considerable thought, to go ahead with having this baboose. Chloe and Mylo will have a sibling! I'm continuing to see the high-risk ob-gyn, and the plastic surgeon is monitoring the progress of the pregnancy because I'm the first TRAM flap patient she's had who's gone through a pregnancy post-surgery.

Things have been moving along. However, yesterday provided another cause for pause. I actually didn't want to bring this out into the open because it's quite personal and traumatizing, but because of the decisions other people have made, I have no choice but to address this disturbing issue.

In recent months, it had come to my attention that highly sexually explicit material on the internet had been associated with my name and image without my consent or knowledge. I took steps to make sure these sites were taken down, and I thought that this could be something left in the past. However, I discovered yesterday that this violation has been continuing even up to yesterday. The person or persons putting these disturbing stories and images of me out there has went so far as to link this crap to my real blogs. I'm trying to move past the gut instinct I have to curl up in a ball and think about how I feel like I'm being raped over and over again on the internet in front of countless people, but instead, focus on how I can get my life back once and for all, and have this bullshit be over with. I feel like if I air this shit, instead of hiding from this pervert like I had been, then perhaps he or she will cut the crap. I'm trying to get on with my life, and I need for these jackasses to knock it the fuck off. These actions not only endanger me, but also my family and friends.

So. There is a lot going on, yes? But I know I'm strong, and I know I am able to not only make it through all these challenges, but be of service to others. I'm starting a writing workshop business, and I'm finishing my memoir. And I hope that my stories--my TRUE stories--will have some relevance and provide reflection to other people. Cancer, divorce, sexual predators--weak. By the end of the year, all that will be under my foot, and my new family, my kids, and I can be happy and secure with our present and our future.