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”.

Advertisements

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.

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.

Gratitude (and a little about dignity)

It’s been just over a year since I was diagnosed with breast cancer.  January 2, 2013.  First business day of 2013.  That was how my year started off.  Before the month ended, I’d had a double mastectomy and was awaiting news of whether I’d need chemo and/or radiation.  Luckily, I was determined to be in the low-risk for recurrence category so chemo was not recommended.  I say “luckily” because I was scared shitless of having chemo; now, I wonder if I would have more peace of mind if I’d had chemo.  I am 6 days away from my next 3-month follow-up with the oncologist, and I am already worried about what he’ll say.  Would I be less worried if I’d had chemo?

I did end up having 6 weeks of radiation.  That was a piece of cake.  Er, what I mean to say is that radiation is a deceptively easy treatment.  It was tedious and a little inconvenient (especially the part where I had to figure out alternate treatment options so I could leave town to attend my mother’s funeral in April), but it wasn’t really too bad.  Except that now, 8 months later, I am having such ugly complications because of the radiation.  You see, all the crap they warn you about regarding how radiation kills the tissue and the little blood vessels and capillaries that carry blood to the tissue…that shit really happens!  I’m proof.  I’ve now had 4 surgeries this year — boobs removed (January), tissue expanders put in (June — OUCH!!!!!!), expanders replaced with silicone (October — not too bad, until incision decided not to heal), and finally, silicone implants taken out (also, not too bad until incision decided not to heal).

In some respects, I ended my year much as I started it: having my boobs removed.  This last surgery gave me the opportunity to revisit all the feelings and fears I’d encountered when I first found out I would lose my real breasts almost a year prior.  I think I had a slight advantage, thought, because this time I knew what to expect from breast surgery, I’d already been completely breastless once, and, quite frankly, I was so uncomfortable that I couldn’t wait to get the implants removed.  It did provide some relief initially, until the incision opened up again.  So, for the last 3 weeks, I have been home, “taking it easy”, being waited on, not driving, not working, not cooking or cleaning or doing laundry, not carrying my own purse, not washing my own hair, not even taking real showers.  I’ve had home healthcare nurses visiting every other day to tend to my wounds.  The last I heard (because I still haven’t – and can’t – look at my wounds), I am starting to show some improvement.  The tissue is starting to look a little healthier and the doctor wants me to get in the shower every day now.  No more of those mamsy-pamsy sponge baths.

I have learned a lot about dignity (and the loss of it) this year, and I want to write about that.  But not today.  When I started writing this post, that was my intent, but it is a cloudy, dreary day outside, and I don’t want to darken my heart.  Losing your dignity is dark.  I am fortunate that even at my lowest points, I had something to be grateful for.  When I was apologizing to my husband as he emptied the disgusting drains or held my hair as I puked, he asked me to please stop saying I was sorry and to just say thank you.  To be grateful that he was there to do those things for me.

I am so grateful.  From a practical standpoint, I am grateful for my awesome health insurance.  I don’t even know where to start, except to say that BC (before cancer), I always heard bad things about Health Plan of Nevada.  AD (after diagnosis), I am here to tell you that my insurance company is AMAZING.  I haven’t had one single issue with them.  They have paid all my bills without question.  I have never had to worry about access to doctors, medication, treatment, nurses (seriously, I had a nurse come to my house on CHRISTMAS day.  And New Year’s Day for that matter), you name it.

I am grateful for my friends at work who, on two occasions, rallied and donated so much sick leave to me that I have been able to stay home and rest as I needed to.  They’ve covered my work and made me feel just fine about it.  I am grateful for my amazing daughters who have continually lifted my spirits and given me a bright spot to focus on every single day.  I am also grateful for our new addition, Hank.  He’s the little guy we adopted from the animal shelter — a 1-year old shitzu who has excellent manners and has proven to be the most amazing family dog and awesome recovery companion.

Mostly, I am so grateful for my husband.  I don’t know how I would have gotten through without him.  There was a thing that “went viral” (I feel like a poser using that terminology) about the guy who posed in a pink tutu in honor of his wife who has breast cancer.  Well, my husband hasn’t worn a pink tutu, but I’m sure he would if I asked him to. He has, however, accompanied me to every doctor appointment this year (it’s gotta be pushing 30 appointments), sat through 4 surgeries and nursed me back to health afterwards, emptied drains, changed bandages, wiped my tears, cried with me, let me take my anger out on him, carried my purse, told me I was beautiful when I couldn’t look at myself in the mirror, cooked for me, took care of the kids, cleaned the house, helped me shop for clothes that might make me feel at least somewhat comfortable with my newly disfigured body…and he’s continued to love me with and without breasts. 

Yes, I’m grateful.  And lucky.

Re-Opening

Monday, two days before Christmas, it became evident that I was not healing. By that I mean that my incision has re-opened. I’d known a few days earlier that something just wasn’t right, so I shouldn’t have been surprised when my husband told me on Monday morning that we needed to get me to a doctor that day. Knowing that my surgeon is out of town for two weeks and his office would be closed until after Christmas, I was feeling just a wee bit scared and hopeless. In an act of desperation, I asked my husband to call the surgeon who’d performed my mastectomy (Dr. B) to see if he might be able to see me or have some advice. Dr, B was in surgery, but his nurse got the message to him and by 9:00 a.m., he had called my plastic surgeon, who in turn called his nurse, who in turn called my husband. The recommendation was for me to see a primary care provider that afternoon, which I did, and was set up to have a home health care nurse come to do wound care for me. I had my first visit on Tuesday. The nurse packed my wound (ick) and said they’d have someone come out every other day to change all the dressings. She said that if there was a lot of drainage (i.e., if I drained through the bandage she applied), I should call for a nurse if one wasn’t scheduled. So a nurse came yesterday as well. Yes, a nurse came to my house on Christmas. So many things about this Cancer thing have been so surreal, but I have to say that right now I feel…well…OLD. Christmas caroling over the weekend at an assisted living home with my daughter’s Girl Scout troop, I felt like I could identify with some of the residents. (Incidentally, the whole “caroling with my daughter’s Girl Scout troop” thing is a bit surreal itself. I was there because I somehow agreed to be a co-leader for her troop. Huh? Yeah, that is something I never would have done before Cancer. It still feels a little weird, but my daughter just loves having me be a part of if with her, and for that I am grateful I agreed to do it.) And now I have a nurse coming to my house. Weird. But I am so lucky, and wow do I have awesome insurance.

I had also been starting to worry about missing so much work this year. When I took off to have my mastectomy in January, my coworkers donated a bunch of sick leave to me. This was SUCH a gift. Unfortunately, with this fourth surgery, I have now depleted all of my sick leave and have started dipping into my vacation leave, which will go quickly. This has been nagging at me a little bit – the worry that if anything else goes wrong and I need another week or two off work, I’ll be completely out of leave. This would render me in unpaid status, which could jeopardize my health insurance. So when I realized Monday morning that I was having a situation and probably wouldn’t be able to go to work this week, I kind of freaked out. I expressed my fears to a friend at work and within an hour she and several others had donated more leave to me; she had even talked to the benefits coordinator in HR to ensure that I had enough leave to take the next couple of weeks off. Her instructions to me were that she hopes I will stay home until January 6 and just rest and get better. Meanwhile, I’d sent a text to my boss with this latest drama, and his response was, “I’m praying for you.” I’m not a religious person, but that was really touching. Here I am thinking people are rolling their eyes (“Here we go…Jennifer is out sick again…if it’s not cancer it’s something else…”). Not only are they NOT doing that, they are so concerned that they are willing to donate their leave so that I can stay home and heal. These people really care. They aren’t being nice to me because they like my tits. I really don’t feel worthy of such benevolence so I must assume they are being nice because, well, they are nice and wonderful and kind and generous. And I am so, so fortunate to have so many amazing people in my life.
Sometimes I get bogged down with the dates and details, but it hasn’t escaped me that on this day last year (right about this time of the day as I write this as a matter of fact), I went for my biopsy. I remember submitting my leave slip for that appointment and just writing in “medical procedure”. Little did I know that would be the first of many “procedures”. Little did I know a year later I’d be breastless and on my fifth medical leave. But not just breastless; it’s not just a chest without breasts – it’s a gross, scarred, open-wounded, icky, ugly, disfigured, draining, painful mess. It hurts. I can’t look at it. Despite all that, I can honestly say I feel so grateful and loved. I am home resting, not worrying about money or insurance, and being incredibly well taken care of by a most fabulous husband. I really am fortunate.

Back to Work Again

Tomorrow I return to work again. I recalled writing about returning to work after my surgery in October. That was supposed to have been my last surgery. That was supposed to have been my return to work for good with my little breast mounds all resplendent with scars. Never would I have dreamed that in less than two months, I’d be returning to the OR to have those implants removed. I am still stunned. I was always a good healer, yet my body refuses to heal. When I was newly diagnosed, awaiting my double mastectomy, I was struck with the realization that until cancer, I controlled what happened to me. I was in charge of my health and fitness and appearance. Now I have no say. My body is in charge and it has failed me.
This morning I had my stitches removed and now I am having a good deal of drainage due to seromas. This is alarming to me and certainly inconvenient, but it appears to be common and nothing to worry about. Except that tomorrow I have to go back to work. I am already self-conscious enough about my breastless, concave chest, and now I am worried about incision leakage. I’d already been trying to decide which shirt to wear that would somewhat camouflage my breastlessness. Now I must consider that I’ll also have gauze taped to my chest and that I may leak through the gauze. Should I bring a change of clothes? I’m also worried about injuring myself or my wounds, which aren’t completely closed yet. I’ve decided I may need to suck it up and tell my boss exactly what my limitations are in terms of lifting and reaching…it won’t be an issue, but I just hate having to say it.
I feel sad and anxious about having to go back to work tomorrow. However, I’m sure that If I were to write tomorrow night, I would say that the day went just fine. I would say that I found something perfectly suitable to wear, no one stared at my chest, I didn’t leak through my clothes, I had plenty of help with opening doors and such, and everyone was just lovely. And truly, I would be surprised if it is any different.

Breastless

It’s been a week and 2 days since my implants were removed.  This has been such an emotional blow for me.  I had my real breasts removed on January 29, and had tissue expanders placed on June 4, so I was boobless for a while this year; my memory of that time was that I had sort of gotten used to it and I remember thinking it wasn’t so bad after all.  Now I remember that it was bad, and it’s just as bad and scary and shocking now as it was the first time.  I still can’t look behind the gauze.  One night last week when my husband was changing my gauze, I accidentally looked down and tears just poured down my face.

A week and 2 days ago I had my second horrible experience with the nursing staff at the hospital (Valley Hospital in Las Vegas.  Yes, it was so bad that I want to advertise how bad it was).  I am tempted to go into all the details about what happened, but I am trying not to feed the negative energy beast that can so easily rear its ugly head inside of me right now.  Let’s just say that I awoke to the anesthesiologist throwing a fit because the computer wouldn’t work and then the nurse got frustrated, so she left to take her lunch break.  Another nurse came to give me some pain meds, but he had another patient to take care of so he told me if I needed him I’d have to holler.  And they sent me home with someone else’s discharge papers.  There were several things in between being told to holler for help and getting the wrong discharge papers, but again, maybe another day.  Oh, I did tell my nurse that I was quite certain I was having a much shittier day than she was having.  That gives me a little satisfaction.

Apart from all that, this surgery itself hasn’t been too bad.  The pain has been manageable with meds and I am recovering pretty well, physically.  I saw my surgeon on Monday; he was pleased that there is no sign of infection and wants me to come back next Monday to have my stitches removed.  Upon leaving, his nurse (who I have mentioned is absolutely fabulous) came out to the front desk where I was making my follow-up appointment and asked me if I was ok.  She must have picked up on my distress earlier when I was getting dressed and muttered something about not knowing how my husband can stand to look at me.  She told me they can refer me to someone if I need to talk.  She was so kind.  I almost fell apart right there in the waiting room.  I don’t like to cry in front of people, so I kept my lips tight and just said “thank you” before the tears came forth.

In the days leading up to this surgery, I had made up my mind that I should wait at least 6 months, possibly a year, before deciding if I want to give reconstruction another shot.  For some reason, I feel like I need to learn to be comfortable with my boobless body before I get implants.  Something tells me that this is my opportunity to learn to love myself, maybe even like myself, beyond my physical appearance.  But now I have this boobless chest.  It is concave.  It is ugly.  It hurts.  My range of motion is limited.  It is ugly.  Did I mention that it is ugly?  Choosing something to wear every day is such a challenge.  I have 2 shirts that sort of camouflage this imperfection.  Scarves are a godsend right now. 

Despite all this, I have to remember how lucky I really am that I am alive and well.  I can go shopping for some new clothes before I return to work next week.  I could wear a padded bra or get a prosthesis if I really want to.  I have health insurance.  I have an amazing husband who loves me with or without breasts, I have 2 beautiful little girls.  And I am disease-free.