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.

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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.

Boobage

“Mommy, when are you gonna get your boobies back?”  My 6-year old has asked me this question several times this year.  In January I told her that my boobies were sick and had to be removed and a few months later I would get new ones.  In June, following 6 weeks of radiation,  I had the tissue expanders put in. That surgery was really rough, leaving me nearly immobile – unable to raise myself to get out of bed – and it hurt to laugh, cough, or even talk. For days I conversed in whispers. And I still didn’t have anything resembling real boobies, certainly not my old boobies. When I went for my next (what I thought would be my last) surgery to replace the tissue expanders with silicone implants (which I thought would be permanent), she asked if I would be whispering again after surgery.

Recently she has had a renewed interest in my health. On Tuesday of this week she asked me when I’m getting my boobies back. I really thought that by now she understood that my real boobies are gone and what I have now is it. Little did I know, just a couple hours after she asked that I would find out I had to have them – or at least one – removed.  I asked her which boobies she was talking about and she said my old ones. I explained that they were gone, they had been sick and the doctor had to take them out. “Where did they go?”  Well, I’ve only ever pictured them dissected, sitting on a metal tray, part of them having been sent to the pathology lab, the rest to be sent off with all the biohazardous waste of the day. Perhaps they were incinerated. I really don’t know, so that’s what I told her. That and the fact that they are gone for good.

This morning, one year and one day after I had my MRI – one year and one day after I first considered the harsh reality that something might actually be wrong -I am preparing to have my “new” boobies removed.  Essentially, I’m having another mastectomy. Twice in one year. I must again decide whether to remove one or both, except this time I know there’s a strong possibility that I may never have a successful reconstruction.  It’s a lot to digest and it is just as devastating as it was on that fateful day when the surgeon announced that I had multifocal invasive ductal carcinoma in my right breast and mastectomy was my only treatment option.  I was just getting used to this fake boobage, scars and all, and now I’ll be losing it.  And I have 3 days to decide if I will be lopsided, with the intention of going through all this reconstruction business again, knowing it may fail again, or just say fuck it and be done with needing breasts to define my femininity.  I’m strongly leaning toward the latter…I feel like this has happened to make me face my body issues and figure out who I am and what defines me besides how I look. This is a really shitty way to go about any kind of self-discovery.

Something Went Really Wrong

The other day a commercial came on for some cancer center or another, and my 6-year old looked at me quizzically. I asked her what she was thinking and she said, “You had cancer.” I told her yes. “But you don’t anymore, right?” I told her she was correct, that the doctor cut it all out of me. Last night she was asking more questions about whether I still have to go to the doctor a lot, etc. My 10-year old told her I wouldn’t be having any more surgeries unless something goes “really wrong”.

Well, “really wrong” has happened, apparently. Yesterday the stitches came out. This morning as I was getting ready to get in the shower, I noticed blood on my arm. Blood from my incision, which we will now just call a wound. An open wound. Shower was canceled, hubby bandaged me up, and I decide not to go to work until I talk to the doctor’s office. After dropping the kids off at school, I was able to talk to my surgeon’s nurse, who is just fabulous. She then talked to the surgeon (he’s not in the office today), and it is decided that the implant must come out. So I will be having surgery next Tuesday. My fourth time going under this year.

I am in shock. Honestly, the shock I feel is comparable to that I felt when I was given my cancer diagnosis almost a year ago. My two biggest fears were 1) dying and 2) not having boobs. I beat the cancer and had finally made peace with the nipple-less, scarred breast mounds (at least they make me look feminine with my clothes on). I don’t cry every day anymore, and can actually look at them in the mirror. Now I will be boobless again. And I have to decide whether to have the other side removed or be lopsided until such time as we can try the reconstruction again, if that is even going to be an option and if I will even want to try again. The idea of having one fake boob and wearing a prosthesis on the other side is just very unsettling to me. If I’m going to wear a prosthesis, I wish I’d kept my real boob (the left one was not cancerous). I am just so…devastated. My husband made note of what a beautiful day it is outside today and all I could say was that it feels cloudy to me. I know I should be grateful that the cancer is gone, I am going to be okay, everything else in life is pretty good. Lots of silver linings. Quite frankly, I’m tired of having to find silver linings.

So when my girls get home from school tonight, I will have to let them know that Mommy will be having yet another surgery. I’ll have to find a way to say it so they don’t think something went “really wrong”. I guess that’s where those stupid silver linings will come in handy.

Setback

I finished radiation to my right breast (where my right breast once was anyway) at the end of April and had my first reconstructive surgery (placement of tissue expanders) on June 4. At that time, my skin was discolored and somewhat tight, and I had limited range of motion. My plastic surgeon wanted to get to work as soon as possible after radiation was done because of the damage it would continue to cause long after treatment was done. I was completely unprepared for the pain I experienced following that surgery. It was like nothing I’d ever imagined, and I like to think I have a pretty high pain threshold. For a full week I was unable to lift myself from the bed unassisted. I needed help doing simple tasks such as brushing my hair or lifting a shirt off the closet rod. I had to swallow my foolish pride and ask for a third week off from work because I was still in pain and too weak to return.

Time and rest helped and soon I was back to my normal routine, even flipping upside down at yoga, doing my first handstand since my mastectomy (soooo exhilarating! Today as I write this, I can’t imagine being able to hold up all of my own weight, upside down, again).

On October 1. I had my second reconstructive surgery (replacement of tissue expanders with “permanent” silicone implants). This surgery wasn’t so bad. I was able to sit up and do most things for myself pretty quickly, although I was (am) so fortunate to have a husband who dotes on me and takes care of everything before I even have to ask. I went back to work as planned after my two-week recovery. But I was exhausted. So for the first week I cut back to 8-hour days instead if 10 hours. And then I was still exhausted. The surgeon said to give it a good 6 weeks before the exhaustion got better. I also had this nagging pain at the incision site on my right side. At some point, I just became accustomed to always having some sort of pain, so I just try to deal with it, maybe pop a Percocet, and try not to whine or let it hold me back. But then the nagging pain turned into a stinging, almost stabbing pain, and my incision started to look weird. My surgeon gave me antibiotics and said to return in 2 weeks. I went back sooner, at which time he said it looked like one of the internal sutures was working its way out and causing irritation. He removed the suture and gave me instructions on cleaning and dressing the area and said to come back in a week. Two days later it was clear that I was headed towards infection, so the nurse called in another round of antibiotics for me and told me to come to the office after the weekend (sooner than my scheduled appointment).

So today I saw the surgeon. He examined things, poked a little, shined his flashlight on me, and finally told the medical assistant to move me to the big room. He was going to give me a local anesthetic and remove some stuff and sew me back up. And, he added, this was his last shot at saving the implant. I had no idea things were that serious. So he performed his procedure (turns out, the “stuff” he removed was dead skin and tissue…as in necrotic…as in it died because it didn’t have proper blood supply, one of the effects of radiation), and he sutured me back up. Although I was numb, I could feel a lot of pressure and pulling and tugging, so I figured I’d be feeling it later, and I am. It hurts like a mother.

It had crossed my mind before, fleetingly, how much it would suck if this whole reconstructive process failed as the consent forms indicated it might. When I was reading all the warnings about healing and failure to heal after radiation, I thought, “Nah that won’t be me. I’m a good healer. Those types of complications only happen to other people.” Hmmmm…that’s what I always thought about cancer – that it only happens to other people. Again I am reminded, shit can happen to anyone. And right now, I’m hoping the shit that happens to me next is that this incision heals and I get to keep my implant. A week ago I was considering what type of tattoo art I might get to hide my mastectomy scars. Today I am just hoping I am not headed towards more surgery.