For my friends

This morning, I realized that I’ve begun to recognize the signs. There’s the fight, the expression of it, the spirit. Then submission to treatment, whatever works—how ever one’s body is ravaged and
rebuilt it doesn’t matter, as long as there is still life. Then silence, with an occasional note to friends and family that s/he is still here with us, still fighting. More silence. Perhaps only one week passes, or two, or maybe a month. I’ll check in on his or her Facebook page if there is one. I’ll see comments from friends and family on the wall, words of encouragement and support. But there will be nothing from my friend, who’s been fighting the most awful of fights. Then, all of a sudden, I’ll get the email from Karine at Young Adult Cancer Canada (YACC). The subject line always tells the receivers to open the email when we have some quiet time, and we all know. Another one of us has passed.

It’s not a club that you ever want to be in, but if you must, belonging to this club will be life-changing. Of the 20 of us cancer survivors and patients who attended YACC’s Retreat Yourself 2009, four have passed away—one in five of my cohort in the last two years since the retreat.

Emilee, age 32.
Ann-Marie, age 25.
Caio, age 23.
Earl, age 23.

When you are part of a group that spends some concentrated time together, you walk away with memories of the fun stuff that happened in that short time, like sitting around the camp fire telling funny stories or the talent show where we all made asses of ourselves and have the pictures to prove it. You carry the memories of the bonding and confiding about your innermost thoughts and fears in a safe space. You don’t think that the person sitting beside you during meditation or circle is going to die soon. You think that everyone’s made it, everyone’s here, and everyone’s going to beat the odds and be here for a very long time.

But of course, that’s not true. It hasn’t been true in the two years since I attended the retreat. I have the good memories, and I cherish those deeply. But when I wake up to one of Karine’s emails, I have fear—who’s next? Will it be me? Will it be someone I love? . . . I have sadness because look, this is what is particularly sad about young adults getting cancer—they are young, they are just starting their lives. And now, when one of them dies, all that potential, all that spirit and drive—gone.

And I have survivor’s guilt, big-time. I am sitting here with my infant daughter, watching her play and kick and learn how to grab. She sees me sitting beside her, and she beams with joy and love. I tell her that her older brother and sister will be home from school later on, and we’ll all play with her. I know that when my kids come home, we are going to look at craft books and make some felt toys. And I told them at breakfast this morning that I’m going to teach them how to use my sewing machine by making cloth napkins. I get to have this life. But my friends who have passed, it’s over for them. And their loved ones—their life partners and parents and siblings—they will never experience life with them again. They must face a new reality of how to live without. Thinking of that kind of loss brings me full-circle back to the fear I first experience when I see an email from Karine in my inbox.

Having had cancer and having friends pass away from cancer, I cannot stress enough how fragile life is—and how that fragility is to be understood and appreciated. Most people my age aren’t faced with their mortality, and they are blessed to not think about dying until an older person in their family passes, probably when it is “their time” to do so. This is one of the reasons I often compare cancer diagnosis and treatment to going off to war. You don’t know how you will change, how you will come back, or even if you will come back. You don’t know how many friends you will see fall. But you know that if you survive, you will never think of life in the same way ever again.


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Location:Vancouver

We got moxie

See this cute baby, cancer? She's laughing at you. You came into my life four years ago, determined to destroy me. But through some twists and turns and lots of moxie, I kicked yo ass. We are all laughing.








I have to give cancer credit for one thing, though, as it has continued to give me pause for reflection. Undoubtedly, I am grateful for the path that I've been given. Four years after my diagnosis, I am with my soulmate and THREE kids! Last year on this day, Anton proposed to me in Maui, and birds came to bless us on the balcony (no joke!). I felt like Cinderella. We got married in April, and three weeks after that, baby Moxie was born. Our little miracle.

As much as I have to celebrate, being a young adult cancer survivor is certainly not without deep sadness. In June, we lost a good friend to this horrible disease. Caio, as everyone knew, was a beautiful pure soul. I think of Caio and his husband Miles everyday, and I feel anger, sadness, and loss. But I also feel love and inspiration. Miles and Caio were what I think everyone wishes for--fairytale love, child-like love, all love. You were just happy when you were around Miles and Caio. And now, I feel so sad for Miles, as he lives everyday without his beloved. Thinking about Miles and Caio, I know to never take for granted each moment I have with my husband and children. I feel the urgency that at any moment, this life could be taken away. Cancer has given me this urgency, in spite of my youth.

So you see...cancer has taken a lot from me. But in place of what has been taken, so much more has been given. And now, I get to live each day with so much moxie and a whole lot more.

Posted using BlogPress from my iPad

Location:Vancouver

Plaster Princess

How many people get to celebrate three years in remission with a baby? At the end of today (exactly two weeks after my remission anniversary), we will have a little baby girl--our miracle and our princess.

I always do belly casts of my pregnancies ever since my BFF Lisa gave me a belly casting kit (I'm such an expert now, I just buy plaster). We are off to the hospital in an hour, but Anton and I spent some time this morning belly-casting Moxie. She's the only one that got to be casted right before she's born.

Here's a picture of Moxie's cast, on the left, next to Chloe's cast. The difference is remarkable. And while Moxie is being born at 36 weeks today, Chloe was born at 37 weeks (and I think Chloe's cast was done at 35 weeks). According to the sizing ultrasound we did two weeks ago, Moxie is even going to be as big as Chloe was, around 7.5 pounds. So imagine how squished she felt in there with the tram-flap mesh...and how things were mega difficult for me! But we will both get relief very soon!



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A royal birth

April 29th is a special day. And it's not because I give a crap about the royal wedding--cuz I don't. But it's the day our baby is scheduled to be born. As I mentioned previously, this month has been pretty heavy with meaning and thought, from reflection on the third anniversary of my mastectomy to the question of when to have this baby, given the literal confines of my reconstructed body. Lots of hoping for the best, but realistically, it also means fearing the worst. I can't help it. I'm not one of those people that can turn a blind eye of denial to my fears. One example is that in preparing the house and our lives for a new baby, I have also factored in the possibility of losing her. It has only been one year and one week since we lost our son, Veo, to birth defects. So when I began unpacking all the new baby stuff we got, I didn't take some of the stuff out of the original packaging, or if I did, I collapsed the boxes and kept them safely in a pile in case I'd need to return the stuff to the store. Luckily, a friend of ours also gave us a ton of baby stuff, so if we don't end up using it, we can return it to her or donate it. But I just can't give the stuff a place, or count on having to use anything, just yet. I'm too scared to be that confident.

On Tuesday, when we found out the date scheduled for surgery, we were also told that what everyone had been planning all these months might not happen. When we found out we were having a baby, we began having appointments with both the OB and the plastic surgeon who has been involved with my case for over three years. The two of them were eager and happy to team up for this delivery, especially since it has never been done before. My plastic surgeon said she was especially excited because more and more of her breast cancer patients are young woman, who still want to and are capable of having kids post-cancer, and she wanted to see this experience through so she could tell them what to expect if they wanted to carry a pregnancy even if they've had a Tram-flap reconstruction. So the two doctors watched me grow and documented how my body has responded to the pregnancy over the past 35 weeks.

The last week and a half has been a rush to schedule a mutual day when the two doctors could do the surgery asap because my body is in quick deterioration from the strain of the baby's weight on my abdomen. But of course, it's not just about their schedules. They also have to find a time when the operating room is available. Their receptionists have been talking to one another; the docs have been talking to one another. On Tuesday, at our appointment with our OB, she nonchalantly told us that our plastic surgeon might not be able to make it at all. We were in shock. And no alternative was discussed. So the past few days, we've been tortured by waiting and unknowing. It feels to me like those horrible days when I'd wait and wait to hear word about when I was going to start chemo, or when I'd wait after getting some sort of blood test or scan done to tell me if my cancer metastasized. I emailed the surgeon's coordinator to see if I could get info from her. But nothing. I emailed her again to follow up, but all she said is that she hasn't been able to talk to the doc about it, and she hopes I have a nice long weekend. Then I thought, fuck, it's a long weekend! Everyone is off til fucking Tuesday! Does she really think I'm gonna have a nice long weekend when I'm worried out of my goddamn mind? I see the OB on Tuesday anyway, and then it's just three more days til the surgery.

I'm starting the process of accepting that things aren't going to go as planned, or at least I'm trying to accept that. I have to hope for the best, but now, even more so, I'm fearing the worst.

However, my body has been through so much, and despite all that, I'm still able to walk and mostly function as if nothing ever happened. There is something to be said about that. So things don't always go my way, so what? It's silly of me to expect that they would go my way, after all that has happened.

What do I dream of? Having a healthy baby girl, and having the strength to make it through the surgery and recovery process. What am I grateful for? My two happy, healthy, beautiful children...my endlessly loving, patient, handsome soulmate husband...my friends and family...and the fact that I can still laugh, even though I cry sometimes too. I guess my gratitude ends up trumping my fears. I don't regret how I've spent my time. And if I end up having more time to spend, I will cherish it all the more.


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Location:Vancouver

Freaking. Out.

So...I can't seem to escape April being my uber-high stress month. Three years ago, on April 15th, I had my bilateral mastectomy and Tram-flap reconstruction. Two years ago, my husband at the time said he wanted a divorce. Last year, I gave birth to our son Veo, and he died because of all his birth defects. This year, Anton and I are having a baby! This, of course, is a monumentally joyous occasion, unlike the last two years, but I'm still losing my mind, just a little.

With my mastectomy, I totally freaked out. I obsessed over my death for a few months before, working out and away all these morbid fantasies with an art therapist so I could calm my wild mind. I got depressed over the thought of my kids growing up without their mom, and all I could imagine was going under and never coming back again. But obviously, everything turned out fine, and not only did I come back, but I've been cancer free for almost three years (as of Friday).

Now, I'm starting to do the freaking out thing again, and I keep thinking about how at least with the mastectomy, the surgeons have done it so many times before and knew exactly what they were up against. With this c-section, they don't have an exact idea since it's never been done before. I try not to think about the scenario where they take out the baby, see the mesh and the damage, and say to themselves, "Now what?" or "That's worse than we thought." I think about how the worst would happen, and I'd be leaving my new husband with a new baby, and there would be three kids without a mom. I try not to think like that; I focus instead on the excitement of having a new baby--a baby who's a little pioneer on the landscape of having a baby after breast cancer.

But at night, when everyone is sleeping--that's the hardest time. I'm alone with my thoughts and my body full of pain. I look at Veo's tiny footprints on our shelf where I honor the people who have died--those who have made an impact but whom I have never really met, like my Vietnamese grandmother and Vietnamese half-brother.

I need to remember that with heartache and loss come motivation and inspiration to survive and to be grateful for what we have now. I have a husband who brings me laughter and love every single day we are together. I have two kids who impress me with their imaginations and wonder, and who make me feel good about being a mom. And I have a baby inside, fiercely kicking and living up to her name, Moxie. I like to think she's trying to tell me something along the lines of, "Don't worry, Mom. I'm a fighter, and you are too. And we'll all be together soon, safe and sound."

Growing Pains

Here is me with my eight-month-old baby belly! Eight months! Not that huge, thanks to my Tram-flap mesh.




This pregnancy has sure been a ride. The last trimester has been increasingly difficult and painful. I knew that no one, including the doctors, knew what would happen to me as the baby continued to grow. But what I didn't anticipate is that the doctors could not really understand what it feels like, and hence, were at odds about what to do with my pain.

First, I started having burning sensations in the lower part of my abdomen, which is where the sutures for the mesh are. It felt like my flesh was tearing, and in fact, that's exactly what has been happening. The pain comes and goes, but now when it comes, it's pretty intense, like somebody stabbing me from within.

Another issue is walking or sitting or moving from one position to another. I feel like my pelvis and joints are locking up, and I get stuck mid-air, afraid to move because I know how painful it will be when I complete the movement. But obviously, I can't stay like that, so I take a big deep breath, and just move (and scream).

So my family doctor prescribed me hydromorphone for the pain. I asked her about how it would affect the baby. She said that the baby would go through a little bit of withdrawal for a week during which she would be cranky, but it wouldn't be that big of a deal, since we had to weigh the circumstances of the intensity of my pain because me being in pain isn't good for the baby either.

For a few days, I took the pills, and it helped a little, but my OB wasn't happy about that. So I took Tylenol with codeine instead when I had pain at night, and that gave me a tiny bit of relief. Now, I've become used to being in pain and don't take medication that much.

Everything is compressed. There is no room. My OB noticed the appearance of my belly, which is like a muffin, with a band where the mesh is, and then a roundness at the top where the band is not. Breathing is always difficult in the last couple months of pregnancy, but it's even more so now. And my doc gave me Ativan because I've been feeling claustrophobic within my own body and having panic attacks.

Now, my plastic surgeon has ordered me to bed rest because the weight versus the constriction has become a bit worrisome. And my OB is considering moving the delivery date up at least a week early. I asked the OB if they will put me under general anesthesia after they deliver the baby via c-section in order to repair the mesh, and she said she doesn't know. The part where they don't know what they are going to see scares me a bit, but I trust that they are the best experts to do the job.

I have all the usual pregnant mom instincts like nesting and feeling restless, but I also have new fears, especially not knowing how the surgery and recovery are going to be. However, when I feel the baby move, whether in a small or big way, I am happy that she seems okay, if not a little concerned about how much space she has in there. We are in this together, she and I, and I can't wait til we have our own space.

Location:Vancouver, BC, Canada

Is Breast Cancer Caused by a Virus?

Anton and I saw these short films on YouTube a couple months ago, and they blew us away. To think of the possibility that breast cancer could be caused by a virus (like HPV causes cervical cancer), and that if so, there could be a vaccination and a cure!...And to wonder why the medical field hasn't encouraged research into this--these ideas nag at us. But please watch these videos, spread the word, and think of ways that you could possibly play a role in increasing research into a breast cancer virus.

(If you're having problems viewing the videos here, just click on the YouTube icon on the bottom righthand corner of each frame.)

Alive

A week after we told the kids that they were getting a new sibling, Chloe asked, "Is the baby still alive?" Her innocence and concern tugged at my heart. She's thought of Veo, the brother she and Mylo lost inexplicably. And now she's worried about her baby sister. I told her that yes, the baby is alive. She and Mylo smile, ask questions, make up stories for and about their baby sister. And yes, Chloe, the baby is alive. We are all alive.

Rabbits

It's soon going to be the Year of the Rabbit, which happens to be my year. Rabbits are creative, compassionate, and sensitive. And our baby girl will be the same. Yes, we are having a baby!

Soon after Anton and I got engaged in Maui in August, we found out that we were pregnant once again. We faced this new blessing with a lot of fear, as we had been devastated by the loss of Veo in April. But as soon as we saw all my doctors, we were reassured that we would be well taken care of. The genetics department at Women's Hospital took charge of extra screenings and tests, to see if this baby would have the same defects that Veo had. We also had more appointments with my family doctor, obstetrician, and plastic surgeon, all of whom have been keeping a close eye on me.

We kept the pregnancy mum, especially from Chloe and Mylo, because Veo's death was so hard on everyone. We wanted to make sure we would spare the kids those horrible feelings and confusion they experienced with the loss of their baby brother. And with each test that I took, each ultrasound that we waited for, we held our breath. Luckily, everything has turned out okay, and we have now just been able to share the miraculous news with all our friends and family!

Baby Girl (yes, we found out!) is kicking me full force now, and I savour each movement I can feel. But it has been a difficult challenge on my body, and today when I had a check-up with my Ob/Gyn, she said, "Yes, it's going to be a long pregnancy." There is, of course, still the issue with my TRAM-flap. If you look at me, you probably wouldn't recognize that I am over five months pregnant. I just look like I went on a carb binge. The metal mesh is not budging, and I'm not sure how or where baby is growing, but she is. It does make walking and moving and turning in bed a less than comfortable experience. But I just have to take it slow. And it seems, for whatever reason, that the epilepsy I had as a child has returned somewhat, and I've had three seizures since November. I've seen a neurologist and had two EEG's, but there's not much we can do at the moment but be careful. And then there was a kidney infection which left me hospitalized in Los Angeles for five days. Whatever. I can take it!

The doc wants me to come in every two weeks instead of once a month. She and my surgeon are closely watching my growth, to see when it will be the best time to do the surgery to take baby out. It's going to be a complicated C-section, as they will have to cut through my mesh. At the same time, I will likely get a hysterectomy because of my increased risk of getting other reproductive cancers. Am I sure I want to do this? Absolutely. I've got two beautiful children and a baby on the way, and I feel that after all that, my family will be complete. I want to be around for a long time to see them all grow up.

Yesterday, I had my six-month oncology check-up, and I am happy to say that I am still in remission. I am half-way to the five-year mark, when we can all breathe a huge sigh of relief, because at the five-year mark, my changes of recurrence go way down!

I'm finding that almost three years after having had my mastectomy, I'm finally at a point where I can move forward with more confidence, with less fear. I have to remember: I have survived so much, and I am a better person in the end. I have learned so much in the past three years that I can teach my children, and other cancer patients and survivors who feel so alone. In November, Anton and I have the privilege of attending a young adult cancer survivor conference in St. John's, Newfoundland (see my links to the right for info on Young Adult Cancer Canada). To say that the weekend was amazing and inspirational is an understatement. So many of us came together as a family, remembered those who were lost this past year to cancer, and motivated each other to be there for and to reach out to other young adults with cancer. One of the main issues for young people with cancer is the feeling of isolation: you have cancer but you're young--you're not supposed to have cancer. You're supposed to be starting a career, having kids, getting married. Now what? At this conference, we learned how to cope and thrive, and to help others do the same. It gave me and Anton a lot of hope and comfort.

Now we find ourselves in this new year, with new promise for positive energy and happiness. We have survived, we will survive, and we will be here to help others do the same. Cancer is always a curse, but it can be broken. When the curse breaks--when the patient breaks the curse--the only thing left to receive are the blessings.

One day, I was reflecting on all that has gone on over the past three years. It all seems like too much. But when I ask myself if I would do it all over again--if it meant that I had to do it all in order to get to where I am today, with my kids, with Anton, with this new baby that will complete our family--without hesitation, I say, "Absolutely. Yes."