Still catching up on blogging, so pretend this post is late February......
OMG I have nipple discharge. *deep breaths* The rational part of me says that this is colostrum and it's totally normal to leak colostrum in pregnancy, but the only other time in my life I've had nipple discharge was a few days before my mastectomy.
Pregnancy after breast cancer is not for the faint of heart!
First off, let's just pretend today is February 14, 2014, Valentine's Day, mmkay?
It's finally here. It's been one year since I was diagnosed with breast cancer.
One reason this blog post has taken so long to write is because I would have written very differently depending on even the time of day it was written.
About mid to late January it started to hit me that this anniversary was looming. First anniversaries of bad things are always the worst, aren't they? It's a painful rite of passage. If you can get through "the first [fill in the blank]" sometimes the pain lessens on the other side. Feeling the full weight of The First Anniversary of Diagnosis Day, at that point I decided I would title this post, "V Day? Try D Day!"
But as the week of Valentine's Day hit, I realized a lot of the details were fuzzy. Did I find the tumor on the 12th, call the doctor's office on the 13th and go in first thing the 14th? Or did I find it on the 13th, call first thing on the 14th and they had me come straight over? I know the thin needle biopsy and core biopsy were on the 14th, but when did I have the mammogram and ultrasound? There was some comfort in not remembering. I started to think, perhaps this date will have no power over me.
My husband, Music Man, was also keenly aware of the emotional landmine this day would bring. And, fun fact for those of you who know him, today is also the first anniversary of the last time he shaved. He had briefly grown a beard, shaved it much to my dismay, so he grew it again in a desperate attempt to find anything that would make me happy. Anywho, last night Music Man gave us a little pep talk. Valentine's Day is not going to be taken over by sad memories and cancer. Valentine's Day is going to be Valentine's Day (being the romantic that he is, he's always loved this holiday). We're not who we were a year ago. Our lives are full of joy, and now full of excitement and anticipation as we are expecting twins in just a few weeks. I whole-heartedly agreed. This date will have no power over me.
This morning I woke up and remembered it was Valentine's Day, and therefore it was the anniversary of the day I was diagnosed.......and that was about it. It was a fleeting thought. I had been at works for hours before I thought about it again. But when I did finally think about it, memories came flooding back. The dead silence in the room after the thin needle biopsy didn't aspirate fluid. The look on my husband's face when he arrived at the doctor's office. The nurse holding my hand as cried during the core biopsy. The shock. The fear.
Cue the storm cloud over my head.
I did bawl the whole drive home from work. I cried for my lost breast. I cried for having to worry about cancer for the rest of my life. I cried over the thought of my babies growing up without a mother.
And then my sister sent me the sweetest text, and I hope she doesn't mind my sharing some of it: "One of my favorite quotes is by Eleanor Roosevelt, 'with the new day comes new strengths and new thought.' I think there is so much irony in this day. Cancer and love. When something so unexpected and horrible happened to you, you had the love of Music Man, your parents, family, siblings, friends, random people praying for you, and next year you'll have the twins to comfort you on this anniversary. You are so blessed and so so so loved." She's exactly right.
A couple of weeks ago I got the card in the mail: I was scheduled for a mammogram and then follow up appointment with my surgical oncologist February 24th. I happily called the office to inform them I was pregnant and was told, "we'll cancel the mammogram and if the doctor has any concerns he can do an ultrasound in the office." Ugh. I remember that ultrasound machine. Just over one year ago I was in his office crying while he used the ultrasound machine to perform the core biopsy. I had been thinking of this appointment as a sort of victory lap. A one year follow up. Somehow I had forgotten the purpose is to look for cancer.
When the day of the appointment came, I did NOT NOT NOT want to go. The day before was our baby shower, which was really more like a downpour! We were ridiculously spoiled by our families with practically everything we need, want and could ever hope for. After a day of reveling in tiny little outfits, and tiny little diapers, and tiny little socks, the last thing I wanted to do was to go to the doctor and talk about cancer. Music Man practically had to drag me in there.
After waiting an hour in the waiting room and another half hour in the exam room, the doctor finally came in. He was very excited to hear (and see!) that we're expecting twins. I wanted to say, "you did this to me! You're the one who made me go off birth control!" but I was practically rendered mute in fear. He did the most comprehensive breast exam in the whole wide world - on both sides - and declared that the only thing he found was that my breast is engorged! I told him how sometimes my ribs ache - to put it mildly - on the mastectomy side, but, like the medical oncologist, he was not concerned.
Big sigh of relief!
In 5-6 months they're going to send me the card again for a mammogram and follow up appointment. If I'm still breastfeeding, he said to cancel the mammogram again and just come in for the appointment with him.
And then I bolted out of there!
Blogger has a neat function where I can see how many hits my blog gets a day and from what source. My blog gets about 30 hits a day, most of them through google searches about breast cancer. I have shared way more on this blog than I ever have in real life, in the hopes of reaching other young women with breast cancer, because there's just not a lot out here for us. In that same spirit, I'll share with you how my mastectomy scar looks like a year later.
Pretty good, right?! It was hot pink for maybe as much as six months and then finally started to fade. The brownish part in the middle is just a tiny bit of areola - it darkened with pregnancy too. When it was still pink, and my scar was still pink, I just thought it was a deeper part of the scar. It was probably August of last year before I realized that that little part was nipple. I haven't used any creams like Mederma to make it fade faster. The most I've done is swipe it with a little bit of my belly butter because sometimes it looks dry. I think it's interesting that, even though I've gained 50 pounds with pregnancy, you can still see my ribs. They really did take the whole thing!
Do you have major anxiety when going to the oncologist's office? How does your scar look? For those of you further along on the journey, how does your scar look years later?
Today I am 31 weeks' pregnant, and Music Man and I "celebrated" by attending a breastfeeding class. Having twins complicates the whole breastfeeding-with-just-one-breast thing, and I have mostly made my peace with the fact that I'll be supplementing formula with breast milk rather than the other way around. Sacrificing my dream of exclusively breastfeeding is such a small price to pay for being cancer-free and having surprise twins! (Do I sound like believe that? Good. I'm maybe 85% of the way there, and that's okay. It's okay to mourn old dreams so that you can move on and welcome new ones)
Crammed in a doctor's office lobby, we learned all about hind milk and football holds and monitoring wet diapers, when the conversation turned to breast care. The instructor says, "while breastfeeding you may develop a hard lump in your breast. It may become red and tender to the touch. What should you do if this happens?"
My entire body tensed. Tears stung my eyes. Hold it together, people are going to think you're having some weird hormonal breakdown. Wait, am I having a weird hormonal breakdown?
I should add Friday will be one year since I was diagnosed with DCIS.
Turns out the instructor was describing a clogged milk duct and mastitis. While I was busy biting my lip and trying to not let tears spill over, I did learn that you can still breastfeed if you have mastitis - not saying you want to, but it's possible. That's good for a one-breasted gal since there's not a back up breast.
I'm going to go ahead and call it now: I will flip my shit if I find a hard, tender breast lump! I've said it before, but dealing with pregnancy's breast changes when you've already had breast cancer is harrowing enough. If I freaking find a lump.........well, I don't know what I'd do, but I don't think I'd be calm about it. It wasn't supposed to be cancer last time either. Fortunately I have a lot of support, and both my medical oncologist and my OB/GYN have said I can come by anytime if I find anything unusual with my breast and get it checked out. And when I see my surgical oncologist in a few weeks, I'm sure he'll say the same thing.
So, heads up - if you're pregnant after breast cancer, the breastfeeding class is full of small triggers, and one big one!
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.
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?
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?