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Oh No, I’ve Been Robbed! Did Cancer Steal My Compassion?

cancer in my thirties young 30s hospital

Cartoon by Robert and Donna Trussel http://donnatrussell.com/cancer-cartoons/

So I spent Thursday night through Friday morning in the E.R. with one of my sons.  I was reluctant to go in, but his 106.2 degree fever and listlessness made it necessary.  Though no one likes the emergency room, I have a developed a particular and overwhelming distaste for the whole hospital scene.  And, sadly, this hospital overnight prompted me to realize how “jaded” I’ve become when it comes to the severity of symptoms and illnesses in general.  Call it another side effect of being a cancer patient.

What I am afraid to admit out loud — and even really hesitant to share in this, my somewhat anonymous blog, is that I am beginning to wonder if cancer is interfering with my ability to be the kind of parent and person I want to be (and the kind of parent/person I used to be).

While procedures and blood draws and surgeries and medications and side effects and…(well, you get the picture) have become the norm for me, they are not the norm for everyone.  And, fortunately, they are not the norm for my children.  But I sometimes lose sight of the fact that everyone hasn’t spent what amounts to months (when you add up all of my time as an inpatient and outpatient since my cancer diagnosis in April 2010) in hospitals and cancer centers for surgeries, life-threatening infections, chemo, radiation, appointments, monoclonal antibody infusions, port blood draws, tests and procedures.  Or that not everyone is waiting to find out if that lesion in their brain is malignant or if their liver function and lab values are so poor because the cancer may have metastasized to a vital organ.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons I see my new perspective reflected in my everyday life.  Someone will tell me about a symptom they’re experiencing or about their cold or papercut and I try to be supportive and kind.  In my mind, though, I sometimes find myself wandering off to thoughts of how upsetting it might be for them if they had to have their breasts cut off and their lymph nodes dug out, if they faced each day with a constant headache, if they had to manage life with lymphedema, or if they lived their lives with unrelenting neuropathy (a leftover gem from the chemo) that gets so bad that it interferes with their ability to concentrate/type/hold a glass.

Or when I hear a pregnant woman my age talking about heartburn or swollen ankles and I am consoling on the outside, but inside I am thinking about how the large masses in my pelvis and ovaries prompted two painful surgeries and the loss of what remained of all but one of my female parts (in case you are wondering, it rhymes with bagina).  And then I drift off to a mental picture of the baby girl I will never get to hold in my arms because:

a.) You need a uterus to have a baby — and ovaries and Fallopian tubes and a cervix lend something to the process, too.  But all of these things filled my gynecologic oncologist’s specimen jars and were sent off to a lab and probably a garbage bin somewhere.

b.) Who would allow someone with my medical history to adopt a baby?  As much as I would love to be here to raise a new little baby, let’s face it, I am clearly a flight risk.

I thought of a “c”.

c.)  I know surrogacy has gained popularity.  But that’s not even an option for me because my eggs were stolen.  Okay, they weren’t stolen.  But it feels like they were.

And I have that heartburn and those swollen ankles (and legs), too.  Two years of chemo and Herceptin messed up my kidneys and made edema a big problem for me.  And I have my dusty bottle of Nexium for my acid reflux disease, but I stopped taking it because I take so many pills that I’d rather look at those pretty purple capsules than ingest them.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons

Cartoon Credit: Robert & Donna Trussel
http://donnatrussell.com/cancer-cartoons/

The bottom line is, even though I want to feel sorry for you because you have a cold, inside I am dreaming of what it would be like if a runny nose and congestion were my biggest medical problems.  Not so deep down I am wishing I could just take some NyQuil, hop into bed, and wake up the next day and be all better.

This is NOT me.  This is NOT who I am.  I am was a kind and thoughtful person before cancer left my spirit beaten and bruised.  Even if I felt like I like was dying, I would put your illness ahead of mine.  I would comfort and take care of you.  I would ask what I could do to be there for YOU.  Even if I had just had surgery myself, I would gladly and altruistically chop vegetables and brown chicken for your homemade chicken soup.  And I would do it without a second thought.

Though my ovaries weren’t technically stolen, I feel like the deeply compassionate person I used to be was.

While this isn’t great news for most of the people in my life, it is worse news for my twin 3rd graders.  I fear that there will come a time when I devalue their medical experiences, their illnesses, their scrapes and bruises, their throat cultures and their trips to the doctor for a flu shot or a blood draw, or the sessions with the nebulizer to that help with their asthma.  And that’s just not good.

cancerinmythirties@yahoo.com breast cancer thirties 30s mom hugging roo baby hysterectomy death dyingSo I am trying my best to undo some of what the cancer has done.  I am making a conscious effort to put the severity of some of my experiences aside to look at things as they are for other people and to avoid comparisons.  I am trying to give my boys the special hugs they need for their scraped knees and to talk them through their fears of having blood drawn or shots given.  And, as was the case this week, I am putting my own exhaustion and pain and sickness aside (as much as I can, anyway) to care for these boys who need me.  Case in point — even though my brain shouted, “Don’t do it!” because I am leukopenic and neutropenic, I climbed into my son’s hospital bed to cuddle with him because he was worried about what was going to happen to him… While I can’t guarantee that it always will, my heart won this time.

I am really trying to do what counts for my kids.  But I may still look at you with envy when you tell me you have a cold.

*Special thanks to Donna & Robert Trussell for allowing me to use their fantastic cartoons*

National No Bra Day and Breast Cancer Awareness Month — OR — Please Put That Pink Can of Soup Down & Put Your Bra Back On

National No Bra Day Breast Cancer Awareness

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***10/9/2013:  I have been completely overwhelmed by the number of visitors this post has received in the past few days (over 130,000 at last count!).  I am not sure who first shared it — or who continues to share it — but I want to THANK YOU all for visiting, reading, and sharing it.  I think the realities of breast cancer are so often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to read or share my blog.  I am sorry to say that my story is just one of many, but with your help, we may just be able to do something to change that.  Please feel free to leave me a comment or to share your own story below — or send an email: cancerinmythirties@yahoo.com.   Thank you all. ***

Peter Griffin / Family Guy “What Grinds My Gears” Episode

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I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.

Are you kidding me?  How on earth could a day where girls and women are encouraged to post and share photos of their braless breasts and to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

I think the answer is simple.  It is not.

Like so many women–and men–who have faced this disease, I have lost my breasts to cancer.  Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.

The cancer had gone so deep and was so extensive on my left side that it was at first inoperable.  Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area).  The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes.  Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.

I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion.  And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes.  Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with.  And there is so much more…

So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite.

I think of myself as an open-minded person.  I do my best not to judge others or their beliefs and ideals.  I have a pretty good sense of humor and am usually the first to poke fun at myself.  And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently.  It is how I cope.  But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me.  But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.

We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease.  How can we be so contradictory?

While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand.  There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death.  It is a serious disease that kills.

And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and not so young) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings.  While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products.  Heck, I just have to look out of my front window to see giant pink garbage totes.  The stores are filled with pink as companies try to make a buck off breast cancer.  If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc.  And oftentimes those that do make a very minimal donation — and not always to organizations/programs where the money is well spent. Case in point — during a recent trip to my grocery store’s pink breast cancer section, I found (after reading the small print) that the maximum per item donation to the breast cancer “cause” was $0.35. An abysmal $0.35 for a $25.00 plastic coffee mug!  And, guess what, once that $0.35 reaches “the cause,” a portion of it is lost to overhead, salaries and advertising costs.

One of the most unfortunate issues here is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients.  Why is this sad?  Because those dollars spent on pink key chains, pink beer koozies, pink boxes of crackers and pink plastic water bottles could be going to fund research into metastatic disease, better (and less harmful) treatments, the elusive “cure” and, dare I say it, PREVENTION.

My intention is not to offend or to hurt the feelings of anyone who is genuinely trying to help, but I think it is important for you to know the truth.  So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research.  You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going.  [There are pink products out there that do help to fund research, etc. — they seem to be in the vast minority, but they do exist.]

And, if you don’t like homework, here are a few great organizations — there are many others, but these are some of my favorites:

*** Metavivor.org ***:  [A terrific organization…]  From support groups to funding vital research, our programs sustain the power of hope.  Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.

*** http://www.standup2cancer.org/ ***:  [Another great one — and it’s not just for breast cancer.  Note that your donation will NOT be BREAST CANCER-specific, but will be directed toward multiple cancers. Since you are reading a breast cancer-specific post I know this may or may not be in line with your philanthropic goals, but if it is, SU2C is an excellent choice.]  “Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.”  Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants.  100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.

Other Important Organizations:

***A number of people diagnosed in my age bracket have emailed or commented about how Young Survival Coalition (YSC) has helped them.  This organization is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. Founded in 1998, YSC’s mission is to serve the roughly 13,000 under 40 (often an under-recognized contingent of the breast cancer population) who are diagnosed with breast cancer each year.

YSC helps these young women by providing support and health information to see them from diagnosis to long-term survivorship. The nonprofit tackles issues specific to this population, like early menopause, effects on fertility, more aggressive cancers and lower survival rates. From YSC, “compared to older women, young women generally face more aggressive cancers and lower survival rates. More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.”  Thus, the organization also advocates for increased studies on young women with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

***If you are interested in making a difference for through an organization specifically targeting Inflammatory Breast Cancer, I recommend http://www.theibcnetwork.org/:  Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations. Our all volunteer board is focused on education and funding research for this 200 year old orphaned form of breast cancer. No Lump Still Cancer.

…or consider a group that helps cancer patients and their families cope with their illness.  For example:

CancerIsAJerk.org  — This is a charity my dear friend jme set up to help families touched by cancer.  You can make a financial donation  or  if you’d like to have a tangible something to wear to show your support, you can purchase a “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families touched by cancer.  You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.

And don’t underestimate the value of local organizations.  My local Breast Cancer Coalition is a perfect example.  The Breast Cancer Coalition of Rochester‘s mission is to make the eradication of breast cancer a priority through education and advocacy; to empower women and men to participate fully in decisions relating to breast cancer; to provide support to those coping with a breast cancer diagnosis; and to focus research into the causes, prevention, treatment and cure of breast cancer.

Also local for me is The Karen Carson Crane Foundation.  Founded by Karen’s siblings after she died of breast cancer, the mission of the Karen Carson Crane Foundation (“the KCC Foundation”) is to provide support and financial assistance for individuals affected by breast cancer; to encourage breast cancer patients to have the strength, courage and passion to overcome their disease; to support local organizations that assist breast cancer patients; and to donate a portion of its fundraising dollars to organizations that research and promote alternative cancer treatment methods.  

There are many other great organizations and groups out there — these are just a few.

And if you can’t help with a financial donation, consider volunteering your time or talents.  Perhaps to local cancer patients — bringing a meal or knitting a chemo cap or scarf, or sending a cozy blanket are examples of ways to show your support.   I remember when a small box of craft supplies was left on my doorstep when I was first going through chemo — what a gift that was — my kids loved it and it kept them occupied for a little while when I was really ill!  Or consider volunteering (or providing non-financial support) at/for a local cancer center, hospital oncology floor, or for an organization that helps cancer patients and/or their families. [If you need help with finding a place to volunteer, etc in your area, please email me with your town/city name & I will do my best to help…].  There are many ways to show your support that don’t require $$.

And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important.  It — what I can loosely call a self-breast exam (but which was really just washing myself in the shower) — is how I found my own lumps, about 17 years before I was due for my first mammogram (according to the recommended screening age back in 2009).  If I had ignored my lumps and waited for that first screening mammogram, I can safely say I would have been long dead!  So please pay attention to your body and your breasts.  While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor.  Thanks for reading…

I will leave you with a picture that I believe is my best advertisement for Breast Cancer Awareness Month:

Me -- 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)
Me — 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)

Side note:  The ACTUAL National No Bra Day is July 9th annually.  Someone had the great idea to do a braless day during October — Breast Cancer Awareness Month — to support “the cause.”  Adding insult to injury, the day they chose — October 13th — is actually the one day out of the whole year designated for Metastatic Breast Cancer Awareness.  Sadly, I’ve seen far more No Bra Day awareness advertising circulating around the web than I have Metastatic Breast Cancer Awareness Day info.

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And P.S. — because it seems that clarification is needed for some — this post is NOT about a woman’s choice to wear a bra or not wear a bra.  Those comments miss the boat completely.  And I do not need a lecture on the merits of going braless.  Wear a bra.  Don’t wear a bra.  That is your choice.  Just don’t choose to not wear a bra on one specific day and call it an effort to benefit breast cancer patients or to advance breast cancer research.  Raising BREAST AWARENESS you may be, but you are not “supporting BREAST CANCER” by leaving your bra at home.

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 10/10/13:  This post was written a year ago on National No Bra Day.  Please visit my latest Breast Cancer Awareness posts here (National No Bra Day: An Update) and here (Is It Really “All About the Titties” on National No Bra Day (a.k.a. Metastatic Breast Cancer Awareness Day?). And thank you all for your support and amazing comments!

April 9, 2010—Life is Like a Box of Chocolate Cupcakes

My appointment is all set.  I have mixed emotions about it, but probably not for the reasons you are thinking.  The top and bottom of it?  I am quite fortunate to be seeing a doctor who founded an internationally recognized breast care center.  But I would be lying if I said I wasn’t a bit concerned because I will be seeing the founder of an internationally recognized breast care center.

There are a number of doctors in the center, so why her?  Maybe I have misheard, but as I understand it, this world-renowned pioneer in the field of breast cancer detection doesn’t see just any random patient (unless there is “news” to deliver) because her schedule does not allow for it.  So I find my mind wandering as I ponder why she would see little old—well, “fairly young” me—someone with no family history or risk factors for breast cancer, and someone with NO health insurance.  Would I be paired with ‘the best of the best’ if this wasn’t something serious?  Or maybe she will be reviewing my mammogram because they need someone who can say with absolute certainty that what I’m dealing with is something benign?

It is hard to keep my mind from wandering to a dark place of ‘what-ifs’.  But I am “blessed” with the ability to second guess myself and to downplay the significance of things concerning my health, etc., so the ‘what-ifs’ quickly melt into thoughts about how everything is fine, how I will be wasting this important doctor’s time, and how the clinic I went to has gone to so much trouble to make arrangements with Cancer Services and with the breast care center—and how all of this is for naught.  I suppose that since this dismissal of my own symptoms will lead to less worrying and dwelling, I’ve found an upside to having lower than average self-esteem.  Ha-ha.

I will do my best to be patient.  I will be seeing her first thing on Tuesday morning.  Today is Friday…  It will be a long weekend, but my boys will keep me busy as we gear up for their birthdays on Wednesday.  They have some fun ideas for cakes they would like, so I’ll probably do a trial run to see what I can come up with for their party next weekend…

In the meantime, I’ll leave you with a photo or two of some chocolate cupcakes I made for a fundraiser.  You can’t tell, but they were supersized (and very chocolaty).  I’ll admit that not all of them made it into the boxes!  Thanks for reading…

April 3, 2010 – They Don’t Have a Frequent Flier Card for This

K & the Easter eggs

Companies and business with “loyalty programs” seem to abound these days.  Purchase 11 large pizzas and get your 12th for free.  Pay full price for 10 haircuts and get the 11th free.  Fill up your gas tank 5 times and get a discount off your 6th fill-up.  Fly x amount of miles and earn a free airline ticket.  Buy 12 donuts and get your 13th free.  These businesses are encouraging loyalty and rewarding you for your repeat business.  The concept makes a great deal of sense—both the business and the patron benefit.  I wish my gynecologist’s office worked the same way.

I’ve been looking for a way to get a screening at least partially covered.  I started with my OB/Gyn’s office.  They said they would charge me full price for an office visit and a breast exam.  I explained my insurance situation and explained that I had already had a manual breast exam less than a year ago and that this was for the same lumps, now larger.  It didn’t help.

So I asked if there was any way I could speak with my doctor and maybe just get a referral to have a mammogram or an ultrasound—I figured this would at least eliminate one charge.  She told me that I could not and said that I would have to come in for a breast exam before I could get a referral.  She  added that the facility where I would have those services performed would charge me a separate fee for their exam.

I assume that if I go in and spend a couple hundred dollars, I could hear the “You’re too young” explanation again, but judging by how much the lumps and my breast itself have grown, I believe I would be sent to the breast center.  Then I would also have the burden of paying for that (much more expensive) visit.  When I asked the office’s gatekeeper if she knew of any resources for obtaining assistance with diagnostic visits, she said there weren’t any the office was aware of.  I told her, ‘thanks anyway’ and said that I would pass on the office visit and on getting the manual breast exam because paying full price out of pocket would be too much for me.  She said okay and added a “Good luck to you.”  That was the end of the conversation.

I hung up, feeling defeated.  Now, it is not that I expected them to give me a free office visit.  I understand that the doctors need to be paid and that the facility has an electricity bill.  But I have been a loyal patient for a long time.  I had good insurance before, so it’s likely that my doctor and her staff have been fairly compensated for any services performed on me in the past.  I have been here many times over the years for my regular check-ups and for issues I’ve had along the way—like multiple bouts with mastitis while I was nursing.  And I was seen there and in the hospital quite a few times during my twin pregnancy—at least until the doctors collectively decided I was too ‘high risk’ to continue with their group and moved me over to the perinatology group at the hospital.  But after my babies were born, it was their office I faithfully returned to.

I have shared moments of joy and sadness, hugs and tears with my doctor.  I encouraged all of the women in my family to change gynecologists and move over to this practice, for goodness sakes!  I have been a very loyal patient.  Shouldn’t that count for something?  Though I don’t expect a free visit, I thought the office might offer some kind of discount or just refer me directly to the breast imaging center to save the expense of an office visit and manual breast exam.

After regrouping, I began calling organizations like Planned Parenthood.  They were friendly enough, but no one was able to assist me with getting a mammogram or ultrasound at a discounted rate.  Or with getting the referral I need so the breast center will see me.  There ARE programs out there to help, but not for someone “as young as me.”

I will still pursue this, but it is Saturday now, so it will have to wait until Monday.

In the meantime, today we are headed to an Easter egg hunt or two with my boys and with my sister, brother-in-law, and my niece and nephew.  This should be a nice distraction.  My little ones are so excited to spend the morning with their cousins.  I guess they aren’t exactly little ones anymore.  They are 5, so they aren’t that young, but since they are only in the 2nd and 3rd percentile for height and weight, they are still physically small.  But something tells me that even if they were 6’3”, they would still be my little boys.

I am looking forward to a special day with the kids.  But in the back of my mind I am concerned.  What will I do if this really is something?  And by something, I mean “the big C.”  Having no insurance makes you feel like a leper of sorts.  A leper with cancer, now who is going to take that on?  I’m trying not to get ahead of myself.  These are likely just benign lumps—statistically, they should be “nothing”, so I am probably okay.

But what if I’m not?  They don’t have a frequent flier card for this.  If my own doctor won’t work with me when I have a true medical problem, why would a doctor who doesn’t know me?

March 25, 2010

I’ve had these lumps in my left breast since last year.  They were small when I first felt them, but now they are not only much larger, but clearly visible when you look at my breast.  It has been so long since I actually felt my breast (I know, I know!  I’ll explain why in a minute) that I was shocked to feel how much bigger they had gotten.

It was last summer when I told my doctor about them.  She felt them, said that they “did not feel like cancer” or “like anything to worry about” and she sent me on my way.  She said that at my age, the likelihood that they were anything was remote.  Since I’d had lumps in the other breast a few years before and she had sent me for my first mammogram back then (at 29) and they had turned out to be benign, I didn’t push it.  After all, out of all the cancers in my family history, breast cancer was not on the list.

But as I put my shirt back on after my exam last summer, I heard the words, “This will come back to haunt you,” very clearly.  I heard them so clearly that it was as if someone was speaking the words to me.  But I did not listen.

This was when I stopped doing breast self exams.  Since these were not my first lumps and since the others had been evaluated and were benign, I figured that I obviously did not know what I was looking for.  If she could feel these new lumps and could identify them as nothing to worry about by touch alone, then I obviously didn’t know what I was feeling.  I decided that doing self exams would only alert me to more benign lumps and take more of my doctor’s time.  I felt silly even bringing these new lumps to the attention of my doctor last year.  I didn’t want to seem like a hypochondriac.  Women my age don’t develop breast cancer and I don’t have a family history.  At least that’s what I thought back then…

But now that the lumps are so much larger, I have a bad feeling.  And I’ve recently learned that women my age DO develop breast cancer and that a lack of family history DOES NOT make you immune.

Still, I waver between being concerned and thinking my concern is silly…

Yep, I’m a Cancer Patient

As you’ve probably assumed from the title of my blog, I am a cancer patient.  I first found the lumps when I was 33.  I was diagnosed exactly a month after my 34th birthday.

It sounds so simple when I say it like this.  But this experience has been anything but simple.

I know there people out there who have faced cancer and who have claimed that they were grateful for the disease.  I’ve even heard it referred to as “a blessing” by a select few.

I will tell you right now that I will never be one of those people.  Ever.  From my first real encounter with the disease (as a child watching her grandmother suffer and waste away from brain cancer), I knew that I hated cancer and that I could never see it as a blessing.

That being said, I cannot say that facing my own cancer and dealing with the aftermath of my diagnosis has been all bad.  Yes, the disease itself and the treatments, side effects, surgeries, fear, complications, etc. have been pretty awful.   I could downplay how rotten these things have been, and I certainly have done this plenty in my “real life” to make it seem like I’m fine and like it hasn’t been as bad as it has at times.  But I won’t do that here.  I don’t think trivializing these elements of my experience will do anyone any good, so I will do my best to be honest with you.

What I mean by “not all bad” is that I know there are amazing people I have met or gotten to know better and experiences I have had that I wouldn’t have had if I hadn’t heard those horrible words two years ago.  And that my children are better AND worse off because of my diagnosis.  Better because they have been embraced by people who love them and who will be there for them if I happen to not be here one day.  And worse because, well, having a mother with cancer is really crappy for a kid on so many levels.  And because they might have to bury me when they are still children — and there’s just no way to put a positive spin on that one.

One day I will tell you about some of the incredible people who’ve touched my life along the way.  About the amazing people who have rallied around me (and my boys) when we’ve needed support.  About the friendships that have been strengthened by cancer, and the relationships that didn’t survive.  About my sons’ best preschool friend and his parents, who went above and beyond for us.  About my children’s kindergarten teachers and a classroom full of parents who showed up on my doorstep with dinner for my kids or who took them to Chuck E. Cheese when I was too sick from chemo to do it myself.  About a school and a school district that came together to make sure my “little” ones had presents under the Christmas tree and that we never ran out of toilet paper when I was struggling to manage these things on my own.  And about nurses who’ve been my caretakers and my friends.  And people who made me feel like I’m not alone despite what could easily be an extremely isolating and lonely experience.

I will also tell you about tragic losses.  And despair.  And fear.  And sleepless nights.  And hot flashes.  And night sweats.  And dreams shattered.  And about how this disease has changed me.  About doctors who have been wonderful.  And doctors who have failed me.  I will tell you about my treatments.  About serious infections.  About what it’s like to be a young woman who takes pills that suck the hormones out of her body.  About what it is like to lose almost all of the parts that make you female by the age of 35.  And what this does to your body and your self-esteem.    About where the cancer was.  About how I found it.  And why it took months for me to have that crucial mammogram.

And one day I will tell you about my life “before” cancer.  About the people who helped to shape me.  About my family and my oldest, dearest friends.  About the things that made me “me” before this disease.  About the things that still make me “me.”

And so much more…

This is my story, for better or worse.  I plan to make it an honest account of what it is like to be given a life-threatening diagnosis at an age when your own death shouldn’t feel so imminent.

At the time of this first writing, I feel that I have so much left to share with my children and so much more to teach them.  So, more than anything, what you are reading is meant to provide a written record of my life for my children and a way for me to help them know and remember me and our story if, one day, I am not here to share in their lives.  But a part of me hopes it will be more than that and that maybe it will bring someone who is going through something similar a sense of comfort or a bit of virtual support.  Or that maybe it will serve as a cautionary tale and that someone, somewhere might pick up the phone and schedule that appointment they’ve been putting off.

For whatever reason you are here, I am grateful that you are.  Thanks so much for reading…