Bra stuffing, post-mastectomy style!

You know the giant post-mastectomy bra that you typically wear for ten weeks after surgery?  It's been ten months, and I'm still stuck in it.  While I'm cleared to be fit for a prosthesis and insurance will pay for six mastectomy bras a year (!!!!!), there's that pesky co-pay and my budget for non-essentials is -$0, if such a number even exists.  So I'm stuck with the stupid "first form" and my one post-mastectomy bra, which looks to be as tired of me as I am of it.

Being pregnant hasn't really helped the situation.  The once enormous post-mastectomy bra is now struggling to keep up with the pregnancy changes.  And the "first form," which was once larger than my breast, now looks teeny tiny.  As a result, I look pretty lopsided.  Add in to the mix that fact that I'm still getting used to having just one breast plus all the physical changes of pregnancy and you end up in a pretty weird place when it comes to body image.  At a time when I'm supposed to feel my most womanly, I'm missing a breast and everyone can tell something is up in the boobage department.  Le sigh.

Today it hit me: I need to stuff my bra!!

Now I am no stranger to bra stuffing.  When I was fourteen I stole my mother's shoulder pads so I could attempt to fill out my cotillion dress.  I revived the practice on and off until I finally discovered the push-up bra when I was 25.  It's still in my drawer, I just can't bring myself to throw it away.

First I took a fluffy sock and stuffed my bra with it.  Too big.  I was lopsided but in the other direction.  Next try: a trouser sock.

I laid the trouser sock out flat, folded it in half, folded it in half again, then put the sock between the "first form" (can you tell I think that is a ridiculous name?!) and back lining to the holder pocket.  So when the bra is on, it's in the pocket but between my chest and the "first form."

The trouser sock worked perfectly!!!  I felt so much more confident all day today!  Instead of seeing my reflection and immediately feeling a pang of regret that I don't look "normal" and feeling cheated by life and all the other complicated emotions that come with losing a breast, I marveled at just how normal I looked!  I looked at my profile from the right, then from the left, and they match!

Life after breast cancer is about making the best with what you've got.  Sometimes it's something profound, and sometimes it's stuffing your bra with a sock.

Breast Changes with Pregnancy

Being pregnant after having breast cancer has brought up all sorts of fears and continuing body image issues.

I'll start with the body image issues.  At first it was exciting to see my breast getting bigger.  I had always wanted to be just a little more endowed, and I was finally getting my wish.

Except...there's only one.  And I'm bound, quite literally, by the post-mastectomy bra.  It's not like I can show off cleavage or go bra shopping.  Instead, my breast is now bigger than the First Form making me look uneven, and it's not all that comfortable to stuff a sore breast in a too-small bra.  So I feel like instead of enjoying this little pregnancy perk, I'm reminded even more of what I've lost.

I don't mean to sound like I'm having a pity party.  I kind of did my first trimester, I won't lie.  And I don't think there's anything wrong with that. It sucks that such an exciting time has to be tainted by breast cancer and can't be "normal."  Sometimes you just have to wallow before you can move on.

Beyond the cosmetic changes, my breast is changing.  Sometimes it hurts, and sometimes it hurts with stabbing pain. Although rare for breast cancer, pain was my first symptom, so breast pain in pretty concerning to me!

Also, the whole "know your breast(s)" through self-exam is out the window right now.  I'm a little obsessive right now about the self-exams, probably doing one every two weeks.  When I do a self-exam now, my breast is full of changes, including all sorts of stuff that wasn't there before!

For me, my DCIS tumor when 2cm when I found it, 7cm two weeks later at the MRI, and 8 cm a week later at the mastectomy.  I don't know how such a large tumor was not invasive!  So when I feel a change in my breast, I'm thinking this an emergency and needs immediate attention.

Except everything I'm describing - the pain, the extra "stuff" - is all perfectly normal for pregnancy.  Aaaahhhhhh!!!!!

I made sure to bring it up with my OB. He was actually really cool about it and took it as seriously as was needed.  Before I could even finish asking which doctor should I call if I do get concerned, their office or the oncologist's, he responded with call the OB's office first.  It wasn't in a "I'm going to cut you off because you're being silly way" but in a "I totally understand your fear and confusion, and here's your answer."  He also wanted to know when my last mammogram was and when my last exam by a doctor was.  And then finally he said that in pregnancy, the breasts are prepared for breastfeeding by 20-23 weeks.  Additionally, with a twin pregnancy, my body is at 2-3 weeks ahead of the babies' gestational age.  Since I was 17 weeks at the appointment, that means my body is acting more like I'm at 19-20 weeks, so my breast is in full on getting ready for breastfeeding mode.  He was very reassuring and not remotely brushing me off, exactly the response I needed.

Have you been pregnant after breast cancer?  Or have breast cancer during pregnancy?  How did you handle breast changes with pregnancy?

Exercise: Yoga for Cancer Survivors

In that horrible three week wait between my DCIS diagnosis and my mastectomy, my very awesome friend Anna took me a yoga class. I LOVED it!  I've kind of dabbled with meditation and with yoga DVDs, but it was nothing compared to this class.  I vowed to continue yoga as soon as I was cleared post-op.

Once I was cleared for physical activity, beyond those post-op stretches, I just couldn't quite bring myself to sign up for a yoga class.  I was still working on range of motion on the mastectomy side and didn't want to call attention to myself with having to modify the poses.  I was worried, rightly or wrongly, that if I told the instructor I was recovering from breast cancer, the instructor would in someway pontificate about the benefits of yoga, mind/body connection, and somehow imply that I could have prevented the cancer.  And then there was the whole issue of what to wear.  At that point I had great disdain for the post-mastectomy bra and would rip it off as soon as I walked in the house, so I knew I wouldn't want to wear it at yoga.  But I also knew I would be too self-conscious to not wear it, and be focused the whole time on my chest and if anyone was looking at me, instead of "being present" for yoga.

I might not like that damn bra, but the dog thinks it's a great pillow!

So much for continuing yoga.

Being in nonprofit management, I diligently read the "community news" section of the paper each day to see what's going on in the nonprofit community.  About a month ago, there was a little blurb about a free yoga class for cancer survivors the 1st and 3rd Wednesday of each month at a local art gallery.

I have very conflicting emotions about cancer survivorship.  On one hand, I had a mastectomy.  I only have one breast.  I have to deal with the threat of cancer for the rest of my life.  The world is now a scary, carcinogenic place.  On the other, I got off easy.  I only had a mastectomy.  I'm surgically cured.  I didn't have to have radiation, or chemo, or adjuvant therapy.  I feel like I belong in the survivorship world, and don't belong all at the same time.  Add to that my age.  I just can't hear, "but you're so young!' one more time.

But yoga, and free yoga, was enough for me to bite the bullet to contact the cancer survivorship coordinator listed in the paper.

And oh boy did she get excited!  She wanted me to come to a free dinner for breast cancer survivors, and to walk in the breast cancer fundraiser...I politely declined and asked her to register me for the yoga class and the cooking class, thinking maybe I can get past some of this fear of food.

When I told my husband that I was going to go to yoga for cancer survivors, and it was free, he immediately said, "you better wear your sports bra, because they're going to think you're just trying to scam them for a free class."

Finally the day came, and I wore my yoga pants (only wore once!), sports bra, and "cancer sucks" shirt.  I hoped I looked the part.

And sure enough, I was quizzed as to my "relationship with cancer" and ended up smoothing down my shirt on my left side so everyone could see I'm part of the club!  And then, everything was amazing!!!

It was inspiring!  We went around the room, and one woman is a 26 year survivor of thyroid cancer and 14 year survivor of breast cancer.  Another is a 5 year survivor of liver cancer.  Another is in active treatment for 5 years for leukemia.  And another had breast cancer, but I didn't catch how long ago.  They were all living their lives, most of them obviously affected by cancer and cancer surgeries, but they were embracing life!

The yoga class itself was great, too!  The class' focus is on breathing with light stretching - much more about the mind and body connection than exercise - but there's a strong current of healing emanating through the room.

After the class, the two breast cancer survivors literally cornered me to ask about my breast cancer experience and to find out if I was going to do reconstruction.  The reconstruction answer is an emphatic no, by the way.  They told me all about their prostheses and where to go.  Evidently there's a place about an hour away that has a large selection of bras.  One even offered to drive me there!

One of them had a mastectomy on one side like me, and she warned me that it gets harder as you get older.  Your natural breast succumbs to gravity; the prosthesis does not.  So she is battling breast asymmetry with one perky "breast" and eventually asked for a more weighted prosthesis to try and even her out.

At the yoga class this week, the other lady brought me flyer from our state's Susan G Komen office including the contact information for their social worker, because she knew I was having trouble finding a prosthesis fitter who would take my insurance.  

And that's what I'm missing out on by feeling "not cancery enough" to be a "true" survivor.  I thought I would be shunned because I didn't have the full cancer experience, and instead these women have embraced me, giving me invaluable advice on issues no one who isn't a breast cancer survivor can really understand.

Have you embraced survivorship?  Do you feel likewise awkward to get involved due to age or stage? What kinds of survivorship services are in your area?

And the surprises keep on coming!

The plan for 2013 was to get pregnant. After years of the timing not being right or not having enough money, my husband and I had decided the timing would never be right, and we were never going to have enough money.  We were going to leap and hope the net appeared.  Last Christmas we giggled that it would be our last Christmas without either a baby or one on the way and in January I started to take prenatal vitamins.  The plan was in motion.

And then I had this pesky ache in my left breast.....  The breast cancer diagnosis was devastating.  I finally had maternity insurance.  I was finally ready to get serious about trying to conceive.  And now instead of working to create life, I was working on saving mine.

My first question to both my surgical oncologist and my medical oncologist was, "am I allowed to get pregnant?"  They both had the same answer, using almost exactly the same words, "Yes. You must have annual mammograms, and you can never go back on the birth control pill, and beyond that, it's up to you. The birth control pill can't cause cancer, but your breasts have already demonstrated the ability to produce cancer [I will never forget that statement for as long as I live].  If there is a seed of cancer, then the birth control pill is the fertilizer that will cause it to grow."

In April it seemed like the plan was back on.  And then in May I had a crazy ringworm outbreak and had to go on oral medication to stop the outbreak - oral medication that could cause birth defects.  I wasn't allowed to get pregnant while on the medication, nor for four weeks afterwards.

At this point I was getting antsy.  When I was just 19, I was diagnosed with endometriosis and I've had two surgeries to remove endometriosis from my uterus and bladder.  Since endometriosis is the leading cause of infertility,  my OB/GYB has been on me since about age 24 to get pregnant now or be prepared for that fertility window to close.  I remember kind of arguing with her because she didn't seem to think Eric's being in college to be a good enough reason to delay getting pregnant!  She also didn't think the lack of maternity insurance was a good reason either.  In an effort to slow down the endometriosis and preserve my fertility, I've been on a medium-high strength birth control pill for about 10 years.  At age 29, she found a complex cyst on my right ovary, and I ended up having surgery to remove it...including the affected ovary and Fallopian tube.  The doctor assured me "that's why God gives you two" and my left ovary would step up to the plate.

So with one ovary, one breast, and endometriosis growing rampantly, unchecked by the birth control pill, I knew my window was closing and it was time to get serious.  I bought an ovulation predictor kit.

Ten days later, my husband and I were staring at a faint second line indicating a positive pregnancy test.  Heretofore referred to as clue #1.  His first words were, "shit just got real."

At my first OB appointment, I very confidently stated the date on my last period, and I knew exactly when I ovulated, and come to find out you don't get a dating ultrasound if you're confident on the dates.  Take it from me, lie like there is no tomorrow if you ever in this position!

At my 12 week appointment, we were finally going to get to hear the the heartbeat.  I knew there was a chance the baby could still be too small to hear the heartbeat with the Doppler and to not get upset if they had trouble finding a heartbeat.  Instead, within 2 seconds of putting the wand on my stomach, the sound of a strong heartbeat immediately filled the room.  We'll call that clue #2.

At this point I was already "showing."  While it was kind of fun at first to have this little pooch, and my husband and I were the only ones who knew why, after a while I started to feel a little self-conscious. I was looking undoubtedly pregnant at three months! And then there were the "you are definitely showing!" and "are you sure there aren't twins in there?" and "you're HOW far along?!" comments.  Clue #4.

The stress and fear following my mastectomy had resulted in my having a somewhat significant weight loss, but with pregnancy I was putting that weight back on like a champ!  I gained nine pounds in five weeks! Clue #5. And that didn't even make that much sense to me, because I was really struggling to eat, and to eat anything high in calories, due to morning sickness - morning sickness that only got worse as I headed into the second trimester.  Clue #6.

At 16 weeks I very clearly felt the baby for the first time - a quick kick followed by a smaller movement.  I knew it was early to feel movement, and to not expect to feel the baby again for days or weeks.  Instead, I started feeling the baby every day, sometimes several times a day.  And just a few days after I felt the baby's first kick, my husband had his hand on my stomach and he felt a kick.  That is way ahead of schedule!  Clue #7.

So last week was my 17 week anatomy scan.  I was an absolute wreck going into this appointment. I could just feel it in my bones that this appointment was not going to go as expected.  I just kept saying to my husband, "we're not lucky people."  And he readily agreed!  When I said I was really worried there was a birth defect, especially since we got pregnant just a few weeks after being on the medicine that could cause birth defects, he said maybe we would luck up and it would just be a little one.  The day of the scan I made sure I didn't have any sugar, or juice, or anything else that could cause the baby to move a lot and prevent our being able to get a good scan of whatever it was that I was so nervous about.  While we were waiting in the waiting room, I was feeling a ton of movement...so much for that plan!

When we were finally called back for the scan, I started joking in a self-deprecating manner with the tech that we would finally find out if there really were twins in there!  As she started the scan, she saw immediately that my placenta is close to the cervix, and if it doesn't move out of the way, then I will have to have a c-section.  Since I was preparing for a natural, unmedicated birth, this came as bad news, but I knew this wasn't THE news that I so nervous about.  I still had this nagging feeling that something was just...off.  Then the tech starts the rest of the scan, and it went just like this:

Me: We definitely want to find out the sex!
Tech: Do you have a feeling of what it is?
Me: Sometimes I think boy, sometimes I think girl.  I had a dream where I was having a girl and then later in the dream the baby was a boy.  My husband here said that means we're having boy/girl twins - haha!
Tech: (very quietly) Is this your first scan?
(My husband said later he couldn't hear her, and he was trying to figure out what she said)
Me: (snapping my head up to the screen to see a head, a line and then a spine) OH MY GOD ARE THERE TWO?!?! (Husband snaps his head to the screen)
Tech: Hold on, let me see if there are more...yes, you're having twins!
Me and my husband: HOLY SHIT!!!!!!!!!!!!!!!! (I'm sure everyone on that side of the building heard us)
Tech: We'll call this one Baby A, and this one Baby B.  Baby A is a boy, and....Baby B is a girl!  You're having boy/girl twins!

And immediately I felt a sense of relief.  I knew with every fiber of my being this appointment was going to be...different.  Turns out I already have some mother's intuition after all!  And no wonder I had no strong feeling on whether we were having a boy or girl!

I had prayed and prayed and prayed to God, pleading that I stay pregnant, and stay pregnant with a healthy baby.  I had just had all the sorrow I could take for this year.

My entire adult life I've been told it would be very difficult for me to conceive, and yet I got pregnant the first time we really seriously "tried" by using the ovulation predictor kit.  And I got pregnant and stayed pregnant with just one ovary.  And I'm pregnant with twins, right away, stayed pregnant with twins, all with just one ovary.  And one breast.  Thanks be to God.

Ready to see the babies?

They're head to head, probably already plotting against us.

Baby Boy just hanging out

Baby Girl waves hello! And I think that's Baby Boy on the right.....

What an eventful year!  We won't be celebrating Christmas as planned with a baby, nor with a baby on the way.  Rather, we'll be celebrating with babies on the way!  Thanks be to God.

Happy Six Month Cancerversary, Part II

For my six month cancerversary, I received a pretty awesome present, but I'm getting ahead of myself.....

September 9th I had an appointment at my OB/GYN's office - the same office that first diagnosed with me DCIS.  I was so nervous about my appointment that I took not one, but two wrong turns getting there!  As I pulled into the parking lot, there was a flood of unexpected emotion.  I started to pull into the same parking spot I parked in on d-day - diagnosis day - and then quickly whipped around to park in a different part of the lot.  As I sat in the lobby, I remembered back to six plus months ago when I was stunned by the news and waiting for my husband to arrive.

But this time he was sitting right next to me.  This appointment was much, much different because........

It was my very first OB visit!!!!!

When I called in early August to schedule the appointment, as soon as she said, "what about September 9th?" I immediately recognized the date as six months from the mastectomy and said, "that will be perfect."

As I was going over my medical history with the midwife, I asked to make sure my GYN knew that I had been there and why, and she jumped up and said she'd go get her right then.  Less than a minute later, my GYN barges into the room squealing and hugging me (and reminding me the importance of monthly self-breast exams).  A minute after that, her nurse who, six plus months ago brought me a cup of water in a real glass which was my first tip off something really was wrong, comes barging in and the squealing and hugging continues.  A minute after that, the nurse's assistant who, six plus months ago took my blood pressure when I first arrived and I was a ball of nerves and half-way crying because I was so nervous, barges in with more hugging and squealing.  It was SO MUCH FUN!

The question they all wanted to know, plus you may be wondering too, is "is it safe for you to be pregnant?"
If I had been diagnosed with a hormone-positive type of breast cancer, there probably would have been a huge proceed with caution flag.  Most young women who have breast cancer are diagnosed in pregnancy or after childbirth with a hormone-positive cancer that grew because of the hormone surges in pregnancy (I have read this, but cannot find a source to site right now).  Please note: there has to be the cancer seed, and then the hormones are the fertilizer. Pregnancy can't cause cancer.

But since I had a HER2/neu diagnosis, not to mention I am surgically cured, I was given the green light by both my surgical oncologist and my medical oncologist.

That being said, I haven't exactly been worry-free about the whole thing.  My breast is changing, which makes self-exams and "knowing your breast(s)" not quite as easy.  I have had pain both in my breast and on the mastectomy side.  Pain was my first symptom of the DCIS, and of course I'm terrified of a recurrence in the form of bone cancer.  In both cases the pain went away after a few hours.

And then there's the fear that I'll have a recurrence and my child will grow up either without a mother or his/her only memories of me will be a sick and dying mother.  When those fears creep in, I just tell myself nothing in life is for certain and to enjoy each day as it comes.

I have not yet gotten my prosthesis for many reasons, chief among them I am having breast changes and insurance pays for one prosthesis a year. I've been waiting till things level out a little bit and I could be fit reasonably well for a symmetrical prosthesis.

And speaking of the prosthesis, I have a feeling as I get late in pregnancy and in the early breastfeeding days, I am not going to want to fool with it!  I haven't even investigated to see if they make nursing mastectomy bras, but I can pretty much guess what that answer is going to be. My plan right now is convert nursing bras into one cup bras, wear a pink ribbon pin over the left side, and call it day.  Because pregnancy, nursing and prosthesis, ain't nobody got time for that!

I've lost an ovary and Fallopian tube to a dermoid cyst/endometriosis, and I've lost a breast to cancer. I don't exactly feel ALL woman, or at least I didn't.  But now I can set my sights on the future, because I've got a little pumpkin on the way!

Happy Six Month Cancerversary to me!

Today it has been six months since my mastectomy!  Six months today I was surgically cured!  Six months today I am cancer-free!*  Happy Six Month Cancerversary to me!!!

With the HER2/neu diagnosis, I have a 95% 5 year survival rate, and I'm finally starting to settle into being part of the 95%, instead of feeling like I'm just waiting around for it to recur.  Part of that is due to the possible reclassification of DCIS, which one of these days, hopefully soon, I'll have a post on!

Since I have the most conservative oncologist on the planet, I finally had my surgery follow up appointment about three weeks ago.  What a difference six months makes!  I was still the only patient under 55.  I still had all eyes in the waiting room on me.  But this time I had my head held high...because I beat it!  Cancer tried to cop a feel, so I kicked its ass!!!  I think every single employee at the oncologist's office came out to say hello to me.  When you're the thirty-one year old at the breast cancer office, everyone knows who you are!

My incision is healing up very well, and has now faded from bright pinkish-red to a light pinkish-purple.  The oncologist gave Rightie the most comprehensive breast exam I've ever had and said he'd send me off for a mammogram in February followed by an appointment for the results in his office.

Triumphant, my husband and I walked towards the check-out when I realized...the prosthesis!!!!  I didn't have my prescription!!!  The whole reason for this appointment, in my eyes at least, was to be cleared for the prosthesis.  Fortunately we were able to flag him down and get the necessary prescription.  Whew!!!

I haven't yet made the appointment for the prosthesis fitting.  The clinic where I was fit for my post-mastectomy bra no longer takes my insurance, so now I have to go to a local pharmacy for the fitting.  A pharmacy?!  It doesn't sound very private.  I'm just really not feeling it.  Neither is my bank account.  Until my bank account and I are ready for the pharmacy fitting, I'll just keep on trucking with my now ratty, bleached out post-mastectomy bra.


Do you celebrate your cancerversary?  Do you do it from the date of diagnosis or the day you finished treatment?  Do you feel like all eyes are on you at the oncologist's office?  What was your prosthesis fitting like?

*Technically I'm not considered cancer-free until 4 1/2 years from now, but cancer-free just makes me feel better than saying I'm in remission.  Remission makes it sound like a recurrence is inevitable.  Like, I don't have cancer NOW, but...........  I'm just going to declare myself cancer-free and put it out there for the universe to know!

Countdown has begun!

ONE MONTH FROM TODAY is my next appointment with my oncologist - well, one of them - and I should be cleared to be fit for a prosthesis!  One. More. Month!!!!

And with the prosthesis a whole new world opens up........  Thin straps!  Lacey!  Feminine!  Matching panties!  And PURPLE!!!!!!

What kind of prosthesis did you get - the adhesive one or the pocket one?  With a nipple or without?  Do you still wear the "first form" and when?