I’m that on top of things.

How important is it to throw a party anyway? I didn’t even think it was on her radar, but then a [...]]]> Yesterday, my little girl turned three (yes, she shares a birthday with William Shatner). Today, I’m making calls trying to find a venue for her birthday party.

I’m that on top of things.

How important is it to throw a party anyway? I didn’t even think it was on her radar, but then a few weeks ago, as my daughter was explaining to a random cafe customer that she’s almost three and going to have a birthday party with a cake and presents and candles and new dress and and and [deep breath] and and and and – it occurred to me that I do have responsibilities in this department – and apparently, this year, she has expectations.

I was in the same boat last year with school, and fatigue, and bills, and everything-all-at-once. I even wrote about my frustration in deciding to postpone her birthday party till April last year, because I just couldn’t do it in March. And then the birthday party never happened. Too much everything. I can’t let that happen twice in a row.

And, I know this is a taboo topic but, I don’t know how many birthdays I will have with her. I can’t promise her I will always be here for her. I’m not planning on going anywhere, of course, but I got a big wake-up call with this cancer diagnosis. I need to cherish every moment I have with her. I can’t promise tomorrow, but I can give her today.

So what about school and everything else? I can’t count how many times a day I ask myself what the right thing to do is, and I don’t know the answer. In the moment, when she’s desperate for my attention, I want to say forget school. So what if that paper is due in 4 hours? When I sit back and look at the big picture, school is just so important. Hopefully it will help increase my earning ability, but more importantly, it’s an education. An education is so much more than just vocational school, and the more classes I take, the more I understand this. It’s critical. And I want my daughter to see that, come hell or high water (and I feel like I’ve seen both recently), I got an education. But attendance in school isn’t just about an education, either. We depend on my student loans to pay the rent. As much as it’s digging us deeper into debt, it’s also my way of helping to keep us housed and fed. Hopefully, someday it will pay off by leading to a decent paycheck.

But, I also want her to understand how important she is to me.  When I hear her say phrases like “I’m trying to get this done,” “I have work to do,” and “In a minute,” my heart breaks a little bit because I know exactly where she’s getting them.

So I’m going to throw her a birthday party. I know it wont make up for all that time with my nose in a book, but it’s important. It’s important to her, and it’s important to me. It won’t happen till April, but this time, I’ll make sure it happens.

And the gift? One of our little traditions is right before bed she picks out what she wants to dream about; we can get quite fanciful, because amazing things can happen in dreams and anything is possible. More often than not, her choice of dreams involves dancing, and several times she has chosen to go dancing in an orange dress, and holding orange flowers. (Before this, I had no idea she even liked orange, but I think it’s becoming a favorite color). The other day we were at the store and she ran right up to an orange dress and said “I danced in this dress in my dream.”  I think I need to find her an orange dress.

Also, is orange the big color this year? I seem to be seeing it everywhere.

Days after my diagnosis, before I learned to reign in my imagination and to view Dr.Google for what it [...]]]> In the cold, dark, fear of 3 a.m., when the cancer patient is most alone, I found ToddlerPlanet, a blog written by cancer fighting princess warrior, awesome mommy, and astrophysicist, Susan Niebur (also known as @whymommy).

Days after my diagnosis, before I learned to reign in my imagination and to view Dr.Google for what it is, I found Susan’s blog. I read for hours: post after post, page after page. It seemed she was speaking directly to me, addressing my personal concerns about life, death, love, cancer, and most important to me at that moment, the well being of my child.  No sensationalism, just an honest look at life and parenting as impacted by cancer.

It would be difficult and frustrating, and at times, extremely painful, she seemed to say, but my days would still be full of love and joy, and I can still be an awesome mom, and my child can still be happy. I read those pages through tears; I was so relieved and hopeful. In the two years since then, we formed an internet friendship, tweeting and commenting on each other’s blog posts. The internet has made possible friendships between people who have never met.

Who will never meet.

Today I read her blog again through tears. Susan passed away today. She touched so many lives, her husband and little boys, her friends and family, the science community, the blogging community, the cancer and health advocacy community… and me, a girl at a computer Seattle, whose life was blessed by knowing her, even though we never met.

Is it just me, or does the moon seem to be a bit bigger and brighter tonight? I’m going to think of it as Susan’s moon.

Thank you, Susan, for the love and hope and strength you shared with all of us. Godspeed.

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This is the story of how I became an on air radio personality.

Ok, it’s not. I’m not.

It’s not even about me.

This is a story about Debbie Cantwell, and the non-profit organization she started on her kitchen table, all by herself, to help young women with breast cancer, like me.

This [...]]]>

.

This is the story of how I became an on air radio personality.

Ok, it’s not. I’m not.

It’s not even about me.

This is a story about Debbie Cantwell, and the non-profit organization she started on her kitchen table, all by herself, to help young women with breast cancer, like me.

This is the story of the Pink Daisy Project, and a generous donation from Bonneville Seattle and the Seattle Seahawks.

The Pink Daisy Project provides care and comfort to young women with breast cancer, by means of grocery cards, gas cards, drug store cards, and housecleaning services.

My little girl and I were invited to accompany Debbie, her mother, and Andrea to the presentation of the honor.

And a check that will allow the Pink Daisy Project to help quite a few more young women.

And then, the Seattle Seahawks presented Debbie with the 12th Man flag, signed by all the players.

Yes, of course, my daughter photobombed that shot.

Then we went into the booth, where Debbie told the story of starting the Pink Daisy Project as a way to pay it forward after receiving help from friends and family members during her own battle with breast cancer.

And she told us about her own Grandma Daisy, in whose memory this organization is named. Grandma Daisy taught Debbie, and the rest of us by extension, how to live and give back, even while battling breast cancer.

Andrea spoke eloquently about her two bouts with breast cancer on different coasts of the country, and the difference between one where she was surrounded by family, and the other where she was more isolated. The Pink Daisy Project was there for her when her family was far away.

And then I got a turn at the mic. Look out Seattle.

Actually, because the experience is still so fresh for me, it’s still quite raw. I still get choked up. My voice warbles at certain points. I have to take a moment…

Deep breath…

And my story comes out.

Pink Daisy Project Radio Interview

Thank you to the Seahawks and Bonneville for your generous donation to the Pink Daisy Project, and the help it will provide for young women across the country facing this terrifying diagnosis. Thank you, also, for broadcasting the story of Debbie Cantwell, and how her work is integral to the recovery of women like Andrea and me.

And thank you Debbie, for being there for me, and everyone else.

Pink Daisy Project on Facebook

Pink Daisy Project on Twitter

This story was about Debbie Cantwell, another woman who survived breast cancer. She went on to build an organization to help other young women with breast cancer. She helped us by hiring someone to come clean our home when I was tired and weak [...]]]> This month you made your international television debut on CNN!

This story was about Debbie Cantwell, another woman who survived breast cancer. She went on to build an organization to help other young women with breast cancer. She helped us by hiring someone to come clean our home when I was tired and weak from the treatments. Now she is being honored as a CNN Hero, and I jumped at the opportunity to thank her, and tell the world how critical her help was. [Full Story]

You were so cute, but I wish I’d made you sit still before-hand, so I could get a better part in your hair.

Then, a few days later, they came out with another video, this time it was longer, and showed even more of you…

[Full Story]

The whole production was so much fun, and the team that came out to interview us was really nice, and set us all at ease right off the bat. Anytime you get a chance to stand up and say thank you – grab it!

We’ve had other big developments this month as well. We moved into a new apartment. It’s quite a bit smaller than our old place, but you love it. For one thing, you get quite a bit more freedom to run around the house than I allowed you in the old place, and you get to spend more time playing unsupervised in your bedroom. Some of that is out of necessity.

For instance, you graduated from a crib to a big-girl toddler bed.

I love listening to your non-stop chatter over the baby monitor. One day I heard: “keep trying, keep trying” and “try it again.” When I became a Mommy, I was granted eyes in the back of my head, and the ability to see through walls; I knew exactly what you were doing. I went into your room and sure enough, there you were perched on top of the crib railing making your escape. No more crib for you.

Unfortunately, you are also quite skilled at opening doors, and know exactly what to do with a deadbolt. I’m sure our attempts to keep you from wandering away would fail the fire marshal’s standards for ease of egress, but a mom’s gotta do what a mom’s gotta do. I’m certain a fire marshal with a 2 year old would understand.

Your happy place here in our new home seems to be mommy and daddy’s bed. Whenever you get quiet and disappear, that’s the first place I look. There you are, perched in the middle of our bed surrounded with your books and babies. And a couple times a day you will take me by the hand and lead me in there and ask to “sluggle.” How can I say no to that? When I go to bed at night, the first step is emptying our bed of your playthings so there is room for me to lie down.

You sing all the time. You make up little songs, but most of the time you just sing a running report of what you happen to be doing at the moment. I have often heard you singing: “sitting in a chair, sitting in a chair…”

Your language skills are really blossoming, but sometimes it takes a little time to figure out what you mean. The other day you came to me and asked me to: “rescue it, the pie cake?” I could not for the life of me figure that one out, until eventually, like Lassie leading Timmy to the well, you brought me to your bedroom and looked hard at the register under the window. So I looked too.

Sure enough, there was a pancake (pie cake) stuck in the register, along with a few crayons.  Maybe we need to rethink the unsupervised playtime in your bedroom. Also, we need to figure out how to childproof that register, because it get’s really hot. I know it gets really hot because the thermostat is within your reach. Maybe we need to rethink those ease of egress issues, too.

I don’t image this post is going to garner me any mom of the year awards, but that’s not the point anyway.

I’m just doing the best I can, just like most of the other parents out there.

Someday you might find yourself in the same boat. Parenting isn’t full of easy, one-size-fits-all answers. It’s hard, and sometimes you feel like there is no right answer. Parenting is trial by fire, learn on the job, and there is no way to know if you’re doing the right thing. It’s also the most fun I’ve ever had.

I’m so lucky that I get to be your mother.

I love you

Mommy

I am so ready to get on with my life, but first I want to take a moment to say thank you to everyone who helped get me through the past 16 months since my diagnosis.

Most people, as they came through [...]]]> Yesterday I spent the day manning the door at a wine-tasting representing 16 different local wineries. Every year, this  event chooses a different charity to which the proceeds are donated. This year, the beneficiary was the Seattle affiliate of the Young Survival Coalition, which supports pre-menopausal women with breast cancer.

Most people, as they came through the door, were thrilled to learn that the proceeds of the event would benefit @YSCSeattle. One woman, however, was not.  She took exception to the fact that this charity focused on the needs of young women. “It’s all the same!” she insisted. I started to launch into the standard spiel, when she fixed a look on me that clearly said she would not hear more  on the issue, and any further discussion was unwelcome. I let her pass with a smile, and turned my attention back to the door.

Since she wouldn’t hear me then, ya’ll get to hear me now.  I’m here to tell you, it’s Not the Same. (Just let me be clear here: these opinions are my own, I am not speaking as an agent of YSC Seattle.)

Cancer affects everyone differently, and it’s a devastating diagnosis regardless of age. I don’t know exactly why this woman took exception to the age focus of the Young Survival Coalition.  I would have asked her, had I been able to engage in conversation; short of that, I can only guess.  Perhaps she felt it was an issue of ageism, that young women are perceived as more valuable than older women. I can imagine her frustration if that is the case. But understanding how a young woman’s breast cancer is different from an elderly woman’s cancer reveals issues that are much more complex. An elderly woman’s life is just as valuable as a young woman’s life, but the issues they encounter as a result of their cancer are quite different.

We go through a number of different stages through the life cycle, and cancer affects people in each different stage of life differently as well.  A three-year-old diagnosed with breast cancer may relate better to other toddlers with cancer than a group of 30-year-olds or a bunch of 80-year-olds.  Regardless of where we are in the life cycle, we tend to relate better to peers within our own age group who have similar experiences and challenges.

The truth is that the vast majority of the services provided for women with breast cancer focus on elderly women.  Aside from those sponsored by the Young Survival Coalition, I was the youngest by a good 20 to 30 years at most of the cancer related activities in which I have participated. Young women with cancer have different needs, socially and medically.

Lets talk about that for a minute

• Young women with breast cancer tend to have much more aggressive cancers that are diagnosed at a much later stage, meaning it’s more frequently deadly.
• Most studies exclude women under 40, meaning those with the more aggressive cancers are not included in much of the breast cancer research.

Well, that’s a little frustrating.

There are other issues as well.  What happens if you are diagnosed with cancer at the height of your career?  When women still have to work twice as hard to even approach equal pay with men, adding a cancer diagnosis significantly impacts your ability to make a living.  And with health insurance tied to your job, that further complicates things.  Sure, there’s FMLA that is supposed to protect your job, but that’s only if you work for a big company. And COBRA extends your coverage if you can manage paying 103% of the full cost, on top of your co-pay and the 20% the insurance doesn’t cover. These rules are there to protect employees, but it doesn’t always work. There are ways around them, and corporations can afford lawyers, employees can’t.

Then there is the whole issue of saving for retirement. We had to empty out our retirement accounts at 40 years old to get through my year of cancer. That means we’re starting over from scratch, zero retirement saved up at this moment.  We’ve already accepted the fact that retirement is just not going to be an option, we’ll just work till we fall over.

Now, imagine the single mom trying to balance a career, raising her children, and cancer in light of all that.

It’s Not the Same.

And it helps to be able to discuss these issues with others who have gone through it as well.

Then there is the sex issue. I’m not so naive as to assume that elderly women don’t have sex.  Considering that I hope to live long enough to be an elderly woman, I’d like to believe there is plenty of good sex involved. I’d also like to think that in my 80s my husband and I will be celebrating our 50th wedding anniversary.  I could be way off here, but I imagine that the impact of a mastectomy on a 50 year old marriage might be a little different than for a woman who just got married, or is planning a wedding, or still looking for the love of her life. I understand that is a huge assumption on my part, but I think it’s one worth considering.

Now let’s talk about fertility.  I don’t know how 80 year old women feel about their fertility, or lack thereof, but 20- or 30-somethings with a rapidly-ticking biological clock tend to think about it quite a bit. To have it suddenly and abruptly threatened or destroyed adds another layer of stress to the young woman facing a breast cancer diagnosis. Once you’ve survived cancer, your dreams have to be rewritten.  Adoption? Sure, for those who are willing to adopt out to a cancer survivor. But don’t forget that cancer has already depleted finances, so the exorbitant fees charged for adoption are even more difficult to overcome. Surrogacy? Also an option, provided you are financially able to preserve the eggs before treatment and pay for the fertility services and the surrogate after treatment.

Most women diagnosed with cancer at an older age have adult children.  That is a completely different situation from a woman who is diagnosed with breast cancer while she is still breast feeding her baby, or worse, while she is still pregnant. Imagine having to decide whether to proceed with chemo during pregnancy, or postpone it until the baby is born.

My breast cancer negatively impacted my daughter’s health. We had to emergency wean her for the mastectomy, and she lost two pounds; that’s a huge loss for an infant. It was several months before she was really thriving again. After the mastectomy, I couldn’t pick her up either, compounding my feelings of guilt while my baby was failing to thrive. What got me through this difficult time with my sanity intact? Being able to connect with other young women who had been through what I was going through. Being able to see that it is possible to raise bright and vibrant children while going through this dark experience made all the difference for me.

A room full of elderly women with breast cancer would never have been able to help me get through this in the way that the young survivors did.

It’s Not the Same.

And I’ll bet an 80 year old woman would not be very comfortable sitting in our support group either.  She might have trouble finding someone with whom she could relate as well.  The Young Survival Coalition doesn’t focus on age out of disrespect for elderly women, in fact reaching old age is one of our goals. We focus on age because young women are an underserved demographic of breast cancer survivors, and this is a way to get them some sorely needed support.

We also brought along a horse (of course), and some coloring materials.

I made several attempts at taking a picture of us together where I didn’t look stoned or have my eyes closed

no luck.

but this picture just cracks [...]]]> My favorite chemo buddy, Gem, accompanied me to my Herceptin infusion on Friday.

We also brought along a horse (of course), and some coloring materials.

I made several attempts at taking a picture of us together where I didn’t look stoned or have my eyes closed

no luck.

but this picture just cracks me up – what WAS she looking at?  And my chins could be used for counting lessons.

We piled string cheese, cookies, apple juice and magazines together and had a picnic right there on the bed.  If you have to get chemo, and hopefully you don’t, a picnic in the middle of the bed is not a bad way to spend the time. (Also, don’t try to take your kid to chemo till you’ve had several rounds of chemo and know what you’re getting in to and how much your child can handle. SCCA, where I get my treatment, provides individual rooms for patients rather than bunching them all into on big room.)

About the Herceptin: If you are confused because several months ago I triumphantly proclaimed that I was done with chemotherapy, that’s understandable.  Technically I am done with chemo. Herceptin is actually a biological agent, and (thank goodness) doesn’t have the debilitating side effects of regular chemotherapy. But I still call it chemo, because it’s easier than describing the difference. It’s administered the same way and by the same people as the chemo treatments..

The type of cancer that I have is HER2+, which is an extremely aggressive cancer with a high rate of recurrence.  The one good thing about HER2+ cancer is the development of the drug Herceptin, which is able to specifically target the HER2+ flagged cancer cells, meaning there’s no wholesale assault on the body. Herceptin does not leave me nauseous, or fatigued, or cause pain like the other forms of chemo.

The big downside to Herceptin is that it is hard on the heart, so hard that I have to have a MUGA scan every 3 months to measure my heart functions.  I just recently re-started the Herceptin after having to take a break because of reduced heart functions.  The work of the medical oncologist seems to me as much art as science –  a delicate balance combined with trial and error. It’s really amazing what they do.

When I was diagnosed with breast cancer, I understood that my daughter’s risk for developing cancer was increased, but it didn’t occur [...]]]> This morning I heard the story of Aleisha Hunter, who was diagnosed with Breast Cancer when she was three years old. I had to rush right home to hug my baby.

When I was diagnosed with breast cancer, I understood that my daughter’s risk for developing cancer was increased, but it didn’t occur to me that she could develop it as a toddler.

That’s an odd thing for me to say; since my diagnosis, I have been drumming in to my friends and neighbors, and everyone with whom I interact online, that no one is too young to get breast cancer. I tell people not to let a doctor, or anyone else, be dismissive of a breast lump or discomfort, or suggest it couldn’t be cancer because of your age. It was easy for me to say a 20-year-old is not too young to get breast cancer, but my mind did not allow me to extend that caution to toddlers.

I spend a lot of time thinking about this diagnosis and how to manage the fear, particularly in reference to my daughter. How do I teach her to live her life at full speed, while still teaching her to take care. I don’t want to teach her to be fearful; I don’t want her to live a life of timidity and fear. On the other hand, I don’t want her to be dismissive of danger. Where do you find that balance? I have thought about teaching her to do breast exams, but the time frame I had in mind was a whole lot closer to puberty. Actually, that probably still wont change. But I want to find ways of discussing breast cancer and breast exams, not as a way of looking for a monster that is to be feared, but just a part of self care, like putting on a seat belt when you get in the car, not an anxious event, but one you wouldn’t overlook either.

But, as in other aspects of parenting, I think the best way to teach her to not let fear take control, to teach her to balance boldness with prudence, is to be a good example.

Hmmm….

I’m nearly done with treatment. I have two weeks left of radiation and then six months herceptin and then I just get on with my life, hoping the beast does not return. I can’t say it will be back to life as usual, because post-cancer life involves a bit of looking back over your shoulder. Post-cancer life means scans every six months to see if the cancer is regrouping for another attack. Post-cancer life means every ache and pain takes on a new meaning, it means asking “Am I being a hypochondriac, or would ignoring this ache be irresponsible?” It means paying extra attention to what lawmakers are doing – will their actions restrict my access to insurance or health care? Heightened awareness is a necessity. The trick, it seems, is to find a way to prevent that focus and attention from becoming a fixation and translating into fear.

And I’ve got to figure this out quick, because I have a little girl watching my every move.

My heart goes out to Aleisha, and her family. She underwent a full mastectomy, inluding lymph node disection, and is expected to make a full recovery. Thinking ahead to those awkward years of puberty and breast development, I hope she is able to develop and maintain a strong and healthy body image, and that she too finds a way to balance boldness with prudence.

I also hope that by spreading this story we can help save more lives. Breast cancer is not a disease of the aged, it can strike at any time. Please check your boobies.