Budding Breasts and Guilt

I have young girls.  They had just turned 6 and 10 when I was diagnosed.  My 10-year old knew about breast cancer, although her understanding of breast cancer at that time was limited to pink ribbons and walks, and commercials she’d seen on TV which informed her that breast cancer kills X number of women every year.   My 6-year old had no clue.  We told her that Mommy’s boobies were sick and had to be taken away.  That was about the extent of what she could grasp at that time.  Fast forward a couple of years later and we all have such a different understanding and breadth of knowledge about this asshole disease.  For instance, one day my older daughter came to me, scared because she felt a lump in her breast.  She was 11.  Breast buds.  My baby was starting to grow breasts.  I feel such guilt about the fact that my babies now have a family history and increased risk of breast cancer.  And I feel horrible and guilty because I have tainted any excitement my daughter, now 12, may have about getting breasts.

My youngest, now 8, started processing the cancer experience shortly after I’d finished treatment and surgeries.  She began asking me questions at random times.  Did I still have cancer?  My boobies were sick, but I wasn’t, right?  Why did I get cancer?  Lately, she’s been telling me that she’s so glad that I didn’t die.  (Of course I don’t tell her that we can’t take for granted that it won’t come back and it’s a fear I feel every day of my life.)  She’s been asking more pointed questions lately such as, will she get cancer.  That is just excruciating.  At some point, I will have to tell them that they are at increased risk and need to start screening when they are 32, but that conversation doesn’t have to happen for a long time.

This weekend, the 8-year old and I were at the grocery store, walking down the laundry detergent aisle.  She pointed out to me a bra-washing-bag (a mesh, lingerie bag, but specifically for bras, apparently).  I jokingly said that I won’t ever be needing one of those, but her sister may be needing one soon because she’s starting to get her boobies.  She thought about that for a second and then asked me if her sister was going to have to have surgery when she gets her boobies.  I guess she’s still processing.  And I’m still feeling excruciatingly guilty.

Cute Shoes (and a little story about excommunication from yoga)

I re-joined the gym.  The last time I was at the gym, I had breasts which were just days away from becoming a thing of the past.  Running on the treadmill those days prior to January 29, 2013, I had NO idea what the next 2 years would hold.  At that time, I was in really good shape — ideal weight, running a few times a week and practicing yoga at least 4 times a week.  I was strong, toned, fit.  Yoga was a HUGE part of my life.  The studio was my second home and my fellow yoginis were second family (also known as a kula).  Then the surgeries started, along with healing complications and a frozen shoulder, leaving me mostly sedentary and unable to do anything physical, including yoga, for the better part of a year & a half.

It’s often said that you will be surprised by the people who disappear when you get cancer.  It shocked me that it was my dear yoga kula that disappeared.  When I had my mastectomy, they sent flowers and cards, and that was really nice.  Following the mastectomy, I had 4 more surgeries and lots of complications, pain, anguish…you know.  During that time, two (I repeat, TWO) members of my yoga family kept in regular contact with me (by regular, I mean a text about once a month from one; the other does my hair, so I saw her frequently).  They would ask my husband how I was doing, so perhaps they thought that was the same as reaching out to me.  My “teacher” told me that the kula would be there when I was ready to come back.

I went back to yoga about 8 months or so ago, but it’s just not the same.  I jokingly tell other students not to get cancer, lest they be excommunicated from the kula.  I am angry at yoga.  By that I don’t mean I’m angry DURING yoga (although sometimes I am); I mean that I am angry AT yoga.  Who gets mad at yoga?  A couple weeks ago, I cut the cord and ended my studentship at this studio.  I felt a sense of relief.  Righteous relief.

As I walked out of that yoga studio for that last time, I didn’t have much of a plan in place…I still take a ballet class once a week, and there a couple of other yoga studios in town I will check out.  In the meantime, I realized I just need to get my body moving!  The other day I bought my new running shoes (really cute with hot pink laces) and re-joined my old gym.  And later that day, my little one and I went to the gym.  I deposited her in the kids’ center and then got on the elliptical machine.  Five minutes in, I thought I was going to die, but after that, it was glorious!  I’m not gonna lie…a lot of the time I was there I was thinking, “the last time I was here, I had breasts.”

When I started writing this post, I had no intention of discussing all the yoga stuff.  What I really wanted to say is that I re-joined the gym, and I got really cute running shoes.  And also, when my 8-year old saw me in my really cute running shoes, she said, “Mommy, you’re really working those shoes”.

Plateau

I started off as a “good” survivor (or at least with the intentions of being a good one).  I had physical limitations from surgeries and that stupid frozen shoulder.  (Quick re-cap…bilateral mastectomy January 2013, tissue expanders June 2013, implants October 2013…refusal to heal…implants removed December 2013, further healing issues and a frozen shoulder.  All of this put me somewhat out of commission for nearly 2 years.)  And of course I was (and still am) self-conscious about my appearance.  But I really wanted to be a good survivor and let this horrible experience make me a better, happier, calmer person.  I will never see cancer as a “gift”, nor have I ever thought of it as a “journey” (new travel agent, please), and I think that’s okay.  A friend told me she thought of me as a poster-child for the non-reconstructed chest, so I thought I’d try to run with that.  I think I was doing pretty well for a while, but lately I feel stuck.  I’m not as happy as I want to be, and I don’t know how to make that happen.  Several months ago, I told another friend that I realize I was given a second chance and I don’t want to waste it.  She thought that was so profound.  Now I just laugh at myself for saying it because I haven’t really fulfilled that desire to not waste this second chance.  I honestly don’t know exactly what I should be doing to not waste it (I’d thought about a career change, but I’m also sort of stuck in my job), so I thought I should let that carry through in my attitude.  Be that bright, positive energy in every room.  It’s really hard not to get bogged down in the bullshit of everyday life (at home and at work), and I forget to remind myself that I’m trying to be a better person.  I’m anxious and prone to anger. I get really angry.  And sometimes I feel depressed.  I worry about recurrence (my leg hurts – is that bone mets?  I’ve had a headache twice this week – is it in my brain?  I lost my balance – it is definitely in my brain.  You know the drill).  My husband very recently said it seems like I’ve hit a plateau.  I’ve been thinking about that since the moment he said it.  Normally, I might respond to a comment like this by pouting a little and passive-aggressively letting him know that he hurt my feelings (“can’t you see I’m doing the best I know how?”), but this time, I’m actually pondering it and realizing that it’s time to figure out how to climb a little higher.

Liberated

It’s been a while since my last post.  Things have gotten better and are, I daresay, GOOD!  I can move my arm again.  My mobility is severely compromised, which is frustrating, but it will get better over time and I can function normally.  Really, the biggest frustration is that I can’t participate fully in yoga.  Downdogs are uncomfortable, I can’t bear all of my weight on my right side and I can’t do push ups, handstands or any arm balances, and I can’t get my right arm flat to the floor in lying positions.  What huge problems to have, right?

I started taking ballet lessons a couple of weeks ago.  After over a year of taking my daughter to class and watching enviously and wishing I could get back to my dance roots, my husband took control and bought me a pair of ballet shoes and some private lessons for my birthday.  They are the nicest ballet shoes I’ve ever owned, and I have had so much fun rekindling my love affair with dance.

In July we took a family vacation on the beach, which caused me a bit of anxiety due to being breastless and needing to figure out what to wear to the beach. At this time last year I had tissue expanders so I at least had SOMETHING to put into a bikini top. I never would have imagined it would all go wrong and I’d be completely breastless this summer. Apparently, the Target swimsuit designers must have foreseen my predicament because they had bikini tops with material in the front to cover everything up, including all my dents and ridges. And, wouldn’t you know it, not a damn person was looking at my chest anyway. I’m finding that to be the case in most instances. I am really the only one thinking and obsessing about it.

I’ve been discharged from the plastic surgeon’s care.  At my last visit we discussed my re-reconstruction options (I had reconstruction after my mastectomy but radiation caused issues with healing and I had to have the implants removed).  Should I choose re-reconstruction, I would be looking at 3 surgeries (first to get tissue from my back because there is no longer enough tissue on the radiated side, a second surgery to put in tissue expanders, and a third to exchange tissue expanders for implants).  It will take a year.  Hmmmm…seems like I went down this road beginning  in January 2013 (just substitute bilateral mastectomy for back-flap surgery as the start of last year’s surgical journey).  It didn’t turn out so well for me.  After this last visit with my plastic surgeon, my attitude was that it’s something to consider, but nothing I could consider yet.  I still couldn’t imagine NOT having breasts (er, Breast Mounds), and figured I’d make a decision to do it in perhaps a year’s time after my body has fully recovered from all the trauma it’s already been through.   Recently, and I do mean recently – as in over the last couple of weeks – my attitude has changed.  I still can’t look at myself in the mirror without a shirt, but I am actually starting to feel okay about not pursuing re-reconstruction.  I am 99% sure I am not going to do it.  I don’t know what it was…one night I had a really big cry over not having breasts (the first really big cry I’ve had about this in a while) and the next day I was like, hmmmmm….do I really need to go through that crap again (not to mention what my family went through) just to have a couple of mounds full of scars, plus new scars on my back?  Not to mention the complications that could go along with 3 more surgeries.  Because I wasn’t sure if I’d want to try to re-reconstruct, my surgeon left the remaining tissue after he removed the implants, so it’s pretty messy looking what with scars and puckered skin and, ugh, it’s just icky and scary and unsightly to me.  I will at some point want to have the skin issue tidied up, but my understanding is that it is a pretty simple outpatient procedure.  So, at this point, I am set on learning to consider and love life breast-free.  Surprisingly, I feel liberated. Breast-free, cancer-free…I can dance to that.

Fear, Hope, and Gratitude

When I last wrote, I still had a lovely open wound.  It’s much better now, all closed up and covered with a lovely scar.  Unfortunately, during the hurting and healing process, I developed adhesive capsulitis of the shoulder (aka “frozen shoulder”).  This was the result of barely moving my arm for months — my chest hurt so badly from the incision/wound issue that I kept my arm bent in front of my chest , as if guarding it from further injury, plus I couldn’t stretch my arm out very far for fear of ripping the wound open even more.  Frozen shoulder hurts, a LOT, and it’s very inconvenient.  I could not move my arm up to shoulder level, and couldn’t move it to the side more than an inch or so.  Once I went back to work from the wound issue, I had to get up at 4:30 every morning so my husband could help me shower since I couldn’t lift my arm high enough to wash my hair) and tend to my wound.  I haven’t slept through the night for a long time as it is, but the shoulder/arm pain (did I mention it HURTS?!!!?) wakes me up every 2-3 hours or so for drugs and ice.  I ended up seeing an orthopedic surgeon and went under in April (5th time under anesthesia since last January) for shoulder manipulation.  I woke up in just about as much pain from this as I did from my mastectomy.  I gauge the immediate post-op pain level by my post-op blood pressure.  After the mastecomy, it was 190; with the shoulder manipulation, it was 150.  I thank the universe for inventing pain meds.  I still do not have full mobility and I still have a lot of pain, but thanks to the shoulder manipulation procedure, a lot of physical therapy, and regular massage, I’ve made a lot of improvement and can now perform normal tasks such as washing my own hair and cooking dinner.  Yesterday I even went to yoga, my first time in over 8 months.  Prior to breast cancer, yoga was a huge part of my life.  I went to class 3-4 times a week and I had a very strong practice.  Having to give that up because of my physical limitations has been very difficult for me.  I was terrified of going back yesterday.  I was afraid that I would be in over my head and would want (or need) to leave half way through class, or that I would injure my shoulder even worse (I did have clearance from my physical therapist to go, by the way), or that others would be staring at my breastless chest (how silly to think I’d be judged by my felow yoginis!).  Most of all, I was afraid that I would feel sad and discouraged about how much I’ve lost in the way of physical abilities.  But, with the support of my husband (my yoga partner), I went with the attitude that I would do what I could and if I had to take child’s pose for half the class, that’s what I would do.  And it felt good to go back!  I couldn’t hold my warriors for as long as I used to, and I had to do chatturangas on my knees, I couldn’t stretch my right arm all the way up or to the side, and certainly no backbends or handstands, but I made it through class.  For sure I am sad that I can’t do all the things I used to do, but I’m not obsessed with it and I’m not discouraged, which is how I was afraid I would feel.  Rather, I feel proud that I made it back to class sooner than I thought I would and I made it through.  I feel good knowing I can do it, and even though it feels like I’m starting almost from scratch, I can do it.

One of the things I have been struggling with the most in these last couple months is fatigue.  I can barely stay awake past 7:00 p.m.  It’s very frustrating and it’s actually a little painful to feel so tired.  Occasionally when I’m trying to fake it (as in pretending I’m not tired because I feel guilty for not being able to participate or be fully engaged with my family at night), I just disappear to the bathroom for a few minutes to have a good cry.  It doesn’t give me any energy, but it feels good.  I keep hoping this will eventually get better, and I’m thinking that getting back to doing something physical (i.e., yoga) will help.  I’m so lucky to have a husband who picks up all the slack for me.  At night after work, he will recognize when I’m tired and tell me to go to bed, even if it is only 7:30.  He makes sure the girls have their baths and snacks and that they get to bed on time, that the dog goes out before bed and the house gets all locked up.  On the weekends, he will tell me to take a nap in the afternoon while he takes care of the laundry and whatever else needs taking care of.  He really is an amazing man.  Tomorrow is our 12-year anniversary, and I have to say I hit the lotto with this man.

One other thing that is concerning me is the results of my recent bloodwork.  I studied my lab results and compared the changes over the last year, and my tumor markers have gone up each time.  I saw my oncologist on Wednesday and he says that they are still well within the normal limits, so he isn’t concerned.  The question I didn’t think to ask, but now can’t stop wondering, is…if I am cancer-free, shouldn’t that number be a big, fat ZERO?  If the range is 0-38, and mine is a 19, does that mean I’m half-way to having cancer again?  Also, my white blood cell count is low, lower than the low end of normal.  Again, he didn’t seem too concerned, just said maybe I was sick the day I had my blood drawn and just didn’t know it.  I can’t help but worry a bit, and I do wonder if that’s why I’ve felt so fatigued.  Perhaps I’m making a broad generalization here, but as anyone who’s had cancer knows, these are the kinds of things that can make a girl lose sleep.

I see my plastic surgeon this week and will of course ask him if trying reconstruction again is going to be an option.  I wouldn’t do it anytime soon, but I do need to know if it’s something I can consider.  I thought I’d be okay with a breastless chest, and I am getting a little less self-conscious about it, but I still can’t look in the mirror, and I miss the femininity of those little lumps underneath a shirt or inside a bikini top.

So, I do have some fear – fear that I am not well, fear that I’ll be stuck with this icky looking chest forever, fear that I am never going to feel good again.  But I also have hope — hope that I’m going to feel better and stronger as time goes on.  Mostly, I have gratitude – for my health (despite feeling crappy a lot of the time), and for my amazing husband, family, and friends.

Dreams

That dream where you show up to school/work/etc. naked?  Boy did breast cancer take that recurring dream to a whole new level.  Oddly, in my dreams, my nakedness always matches the current state of my chest.  For instance, the post-mastectomy (but pre-tissue expanders) chest dream, where I would be running through the streets with my scar laden chest with its folded-in, wrinkly skin.  I would be trying, always unsuccessfully, to find a way to cover up my chest so no one knew how disgusting I looked.  After I got the tissue expanders and then the implants, I would dream of myself at work, at the grocery store, Target, wherever, and I would look down and realize I was topless and everyone could see my scars.  I was mortified.  What’s funny about this to me is that in my dreams I wasn’t worried about being topless in public…my mortification came from realizing that everyone could see what my chest really looked like.  They all thought I had these cute little AA-cup fake titties (my surgeon did a really good job, actually) and I had unknowingly blown my cover and shown everyone how disgusting I really looked.  I had, as my plastic surgeon called them, Breast Mounds, with fat, puffy, nasty scars running the width of them.

I was just starting to get used to my Breast Mounds and was actually starting to like how they looked (in clothing, and only clothing that didn’t show my scars) and was even beginning to think I’d be able to get past how the scars looked, especially with some fancy tattoo work.  And then everything went to hell and I had to have the implants removed.    And now I am back to being breastless with this gross, tight, wrinkly skin, only now I have an open wound on one side!  Sweet!!!!  Now I wake up from that topless dream completely drenched in sweat, near tears, and feeling pretty disturbed for at least a day.  The idea that my friends, family, coworkers, strangers would have any idea how disgusting I look without a shirt…it’s too much to handle.  I am told that, because of my small stature, my breastlessness doesn’t look in any way odd or unusual — I look simply like a woman with a flat chest, they say.  I smile and say thank you, that’s comforting, etc.  If only they knew how disgusting I feel.

Just One Pill

It’s been a while since I’ve written.  I think about it, but just don’t do it.  I still have an open wound, but I’m healing.  I had home health care nurses visiting every other day to tend to my wound, and then my husband took over.  The nursing folks decided I should pack the wound with calcium alginate, which comes in squares similar to a 4×4 gauze and looks/feels somewhat like gauze.  It is working, very slowly, but I am finally healing.  I’ve returned to work.  And, I’ve developed adhesive capsulitis of the shoulder, a fancy term for “frozen shoulder”.  The range of motion issues with my right shoulder began shortly after my incision first opened up, which was right before Thanksgiving.  Because of the pain from the surgeries and healing complications, I was rotating my shoulder forward and holding my arm in front of my chest — partially to protect myself but also to guard my chest and to keep from extending my arm too far and tearing the incision open any more than it was already.  Now I can’t move my arm higher than shoulder height and can only extend it outwards about 4 inches.  It hurts like a bitch and has caused even more restrictions in my activities.  I can’t even reach high enough to wash my hair.  So, every morning, I rise at 4:30 a.m. so my husband can help me shower and then do my wound care.  Again, I am grateful to have him and feel lucky to have such a wonderful caretaker.  But I am so tired of getting up at 4:30 a.m., I am tired of not being able to do things for myself.  I am just tired.  All I want to do is sleep.  It takes all I have to make it through the work day and come home with a smile and energy to interact with my kids and husband when all I want to do is go straight to bed.  The pain in my shoulder wakes me up every 3-4 hours.

I was starting to get depressed and was even considering anti-depressants.  I mentioned it to my oncologist and he said that some anti-depressants can affect the metabolism of the Tamoxifen so I needed to make sure that whoever prescribes them is aware of that.  At  a subsequent primary care appointment (for the shoulder), I received referrals for x-ray, MRI, physical therapy, orthopedic surgeon, and mental health.  I’ve moved out of the depression funk a bit, so anti-depressants are off the table now.  It was really a last resort, a hope that a pill could fix everything but I really didn’t like the idea of taking them.  I don’t begrudge anyone for taking them – I think they serve a really good purpose and can save lives.  I was on Zoloft for years to help deal with anxiety and depression, but I realized that, for me it was situational and my inability to deal was just that: poor coping skills.  The Zoloft just masked the symptoms and kept me from having to deal with my issues and move through them; rather, I just moved around them.  I stopped taking it about 3 years ago.  Getting off of it was a NIGHTMARE and I remember saying that I would never take anti-depressants again due to that.  Still, I was thinking maybe right now would be a good time to consider doing it short-term, to help me through this rough patch, but then I did some research on the drug my oncologist recommended (Effexor) and read that it is the worst one to go off of.  I’m done considering anti-depressants, for now anyway.

I also saw my OB (annual checkup) recently and she recommended I find a breast cancer support group.    I don’t think I’m brave enough to walk into a room full of strangers and talk about this, but maybe it could be helpful.  I may look into it.

I can’t help but wish there were a pill to fix everything, a pill that would have no ramifications, no side effects, just one swallow and everything would be better…man, that would be epic.