What do we tell the kids?

Last week, the Fred Hutchinson Cancer Center hosted a Twitter chat, "Coming Out with Cancer." I was busy at work, so was only able to jump in a couple of times, but I felt the topic was so important and so interesting, that I could share my experience here.

When my mom had breast cancer in the early 1980s, she didn't talk about it. Nobody did. I understand that she didn't tell me, as I was a young child, and she didn't want to scare or worry me. I know she also didn't tell a lot of her friends. When she was in her final decline, a former colleague reached out to her, and she said, "She doesn't even know I'm sick," and I don't think she returned the call. I understand that times were different, and there was still a stigma about cancer overall, and especially breast cancer.

I remember a couple years after my mom died, one awful teacher asked me what had happened. I said she had breast cancer, and the bitch (excuse my language) made a cutting motion with her finger over her breast and whispered, "did they cut it off?" So, that was some of the climate.

But I would lie if I said I agree with how she handled it, at least when it came to me. I was a pretty intuitive kid and had figured out that she had had breast cancer, but figured it was safely in the past. My dad and mom leveled with me when it was clear she would soon die.

So now, here I sit with my own breast cancer diagnosis and with my own young children. And I knew that, even if I wanted to hide it, my kids--especially my 9 year old--would figure it out and would not want to be left out. I also know that the unknown is much scarier than the known. And I wanted them by my side and on my side.

So, as soon as I had an action plan for surgery, I sat down with Kayleigh while Hope (age 4) was a few feet away at the kitchen counter. I told her that I was going to have a pretty big surgery, that we had discovered I had a a small cancer, and well... Mommy's getting new boobies. From across the room, Hope said, "What did you say?!" "Mommy's getting new boobies." <Laughter> "No! Hahahaha!"

G-d bless Hope. She completely broke the tension in the room, and with that, we all started laughing.

Of course, Kayleigh understood the weight of the topic and quickly turned serious again with many questions and some tears. Up until now, the only people she's ever known to have breast cancer, have died, and I wanted her to understand that wasn't a forgone conclusion. So, I explained--in terms she could understand--everything I knew. I told her that I would do everything I could to get rid of the cancer through surgery and medicines, and then we would hope for the best, and I have every reason to believe that I'll be fine. She asked, if cancer is abnormal cells, and cells are microscopic, what happens if an unseen cell escapes?

Oh my, is my daughter not the most brilliant 9-year old ever? I explained that's why I would have medicines, to try to kill any escapees.

The first several weeks were very hard; Kayleigh was very anxious and afraid I would die. The best thing I could do to reassure her was to promise that she knew everything there was to know, and that I would never keep any secrets from her. So, when I tell her my cancer is early stage and as far as we know, it's been removed, it's the truth. I also don't use the word "cure"  and I've brought her with me to oncology appointments, so she's completely in the know.

For Hope, things are more abstract. I bought a book When Mommy Had a Mastectomy, which was an excellent tool for explaining to her what to expect. I liked that it really focused on the surgery, since at the time, we didn't know whether I would have chemo or radiation. The only problem was that, after the surgery, when I reminded Hope how she needed to be independent and helpful, she said, "but Mommy, you're not as sick as the mommy in the book." Who knew that a relatively good recovery would work against me?

The thing that has been the most therapeutic for the kids has been my return to "normalcy." Most especially, me going to work each day and exercising.

As for the rest of the world, cancer doesn't define me, but it is part of my reality. So, I'll talk about it or I won't, depending on the context. That's what works for me. Your mileage may vary.

On my Feet

It's been a while since I updated here. I guess that means things are kinda-sorta normal. It's a new normal, I suppose. I feel fine. Really fine. I'm fully recovered from my surgeries and am so much more comfortable now. I may need some "touching up" in a couple of months in the form of fat grafting. This is where the surgeon liposuctions fat from one part of my body and uses it to shape up the breast area. Sounds pretty sweet, huh? Especially since I've put on 10 pounds since my diagnosis. However, I'm kind of on the fence about it, and feel like I need to learn more. It's nice that I don't have to recover from something right now, and I'm not eager for that again.

My monthly ovarian suppression injections are going just fine (there's that word again). No bothersome side effects. I will begin the aromatase inhibitors next week.

Meantime, I'm exercising more now. Running is coming back slower than I would like, and I've started to incorporate some strength training. It's an odd feeling to be working my pectoral muscles now that they've been displaced by the implants. I'm just trying to take it slowly.

Me on December 6, 2014 after running the Rehoboth Beach Marathon

I like to think I have a pretty good attitude about this whole thing. In general, I feel like I've gotten off easy, given that it appears the cancer was localized, and I won't have chemo or radiation. But I would lie if I said I'm always looking at the silver lining. Last year in December, I ran a marathon in Rehoboth Beach. It was my first marathon in 6 years and was a wonderful experience. I was in great shape, and while my time wasn't as fast as it used to be, I felt really strong. The race itself was great--friendly, well-organized, not too big, beautifully scenic. So, when registration for the 2015 race opened on New Years Eve last year, I signed up. Once I was diagnosed and planned my surgeries, I was okay with the fact that I wouldn't run it this year. But as the date got closer, I was reading everybody's updates on the race's Facebook page. Such positive energy and nervous excitement, and I felt left out and let down. It's hard to accept that I was supposed to happily be running 26.2 miles, and I am now only doing 3 miles at a time and that's with walk breaks. I know that I will eventually work back up to where I was last year, but it does seem harder and slower  now, probably just because I'm older than I used to be, and maybe because I'm 10 pounds heavier. I think my running friends will understand and empathize.

I started running about 12 years ago, as a way to improve my fitness and ease some anxieties I was experiencing. Running was a savior for me. There have been times when I've lost motivation and took breaks from it. But I always felt like something was missing. When I returned, it was like going back to my best friend. When I run with friends, we bond and share things that wouldn't otherwise come up in conversation. When I run alone, I bond with myself, as a form of meditation. Without it, the anxieties are free to creep back in.

So, I know that part of my healing process has to include running. And I know that I need to be patient with myself, which isn't always easy for me. But the act of putting one foot in front of the other, finding that rhythm in my stride and my breath, watching the pavement pass under my feet, feeling the cool clean air in my lungs, taking in the views that rush by too quickly in a car... all of these sensations breathe life into me and soothe my soul to its core. Not every run is easy or even enjoyable, but there has never been a time that I'm sorry to be out there and sorry to have added more mileage to my body. And I'm grateful that despite the challenges of the last 6 months, I am on my feet.

Reconstruction Part 2 and Revisiting the Ribbon

Two days ago, I went under the knife for part 2 of my breast reconstruction. This surgery entailed removing the tissue expanders and replacing them with silicone implants. The pain and recovery is much easier this time. There is none of the pressure of stretching the muscles and tissue, and I'm already so relieved to be gone from those coconut-like expanders. I have drains again, but hopefully, they will only be needed about a week this time. I'm so glad that this step in my treatment is almost behind me.

In the meantime, I need to swallow my pride and concede something. Last week, I had the opportunity to meet one of my 9-year old's teachers, with whom she has grown quite close. I had heard about her and that she is also a breast cancer survivor. Of course, she was just lovely. I noticed that she had a pink ribbon on her ID badge. Then she went on to tell me how she and K had bonded. She told me that one day, she found K sitting in her chair clearly distraught. She spent some time trying to guess what the problem could be. 

  Was somebody being mean to her? No. 

  Was somebody teasing her? No. 

  Was it a problem at school? No.

  Was it a problem at home? A nod, yes. 

  [Bracing herself] What is it? And at that K reached out and touched her ribbon. Mrs. D. hugged her and asked her who. She reassured her as much as she could, not fully knowing the situation.

So, without K having to say anything, the ribbon allowed her to express her fear and sadness to a safe and understanding outside party. Since then, K and Mrs. D. have forged a wonderful relationship. K has someone who understands what's happening and gives her kindness and support without her having to say or ask for anything. 

And it's all because of that damned pink ribbon. I still don't like the "beautification," the sexualizing, or the marketing that seems to come along with it. But I love that it gave an entree for K to talk about it, and I think it also offers her--and many others--hope in that there are people who survive this disease to tell about it and offer perspective and comfort to others. For that, I'm very grateful. Perhaps I'm even more grateful to the lovely woman wearing that ribbon who not only devotes herself to helping children learn but who is helping my kiddo through a very scary time in her life. 

Season of Pink

As I was composing this post, I received a blast email from my 3rd grader's school, letting us know that the children are invited to wear pink on Thursdays of this month to "increase awareness of this disease." Now, I'm not sure why 6- to 10-year old kids need to have their awareness raised, but I'm willing to withhold judgement. Perhaps this will help my daughter feel less isolated and more supported at school. With this as a possibility, I can understand why some people with breast cancer appreciate the pink ribbons and Breast Cancer Awareness Month. If so, I'm glad that they get something positive out of all the pink, and to them, I raise my pink wine in a toast of solidarity. We're all in this together.

But for me, there's another, less positive side to the being surrounded by pink. It's everywhere we look. A simple pencil? Pink.*

A package of sausages? Pink.

 

These friggin' porta potties? Pink!*

 

Okay, let's put aside the way companies often use the ribbon as a marketing tool. That's been covered by other thoughtful and smart people.

This is my visceral reaction to it, and it's something I've always felt. After watching my mother and then one of my closest friends die of breast cancer, I don't think we should "dress up" what women experience. Breast cancer is often a combination of disfigurement, disability, and/or life ending. Look at some pictures of women after a mastectomy. See the scars, the drains, the swelling, the fatigue and pain. It's not pretty and it's certainly not pink.

Survivors are under a constant cloud of anxiety that the cancer may come back, and if it comes back, will be terminal. Women with metastatic disease may live for months or years, but always knowing that their time is limited. Time with children, spouses, parents, friends, colleagues. Time to zip line in Costa Rica, to ride a camel in Morocco. Time to see children married and grandchildren born. Time to watch good movies on a rainy day.Time to dance and sing with abandon at rock concerts. Time to laugh at silly memories. This knowledge is not pretty and it's certainly not pink.

As people with cancer approach death, they are but a semblance of their healthy selves. Often bloated or emaciated, with bruises, catheters, in intense pain and in a haze of pain killers; unable to fully articulate their thoughts and feelings; unable to sit up and hug their loved ones; smelling not of their familiar fragrances, but sour and antiseptic. As loved ones, we say goodbye to the idea of the person, for the actual person has long faded. It's not pretty and it's certainly not pink.

Designed for me by my talented friend, Bryan.

The image of the breast cancer survivor/warrior, strong, brave, courageous, and victorious is a lovely image of hope. It's real, no doubt about it. Certainly, more women than not, now survive breast cancer. It's a wonderful aspiration. But if we are going to discuss what cancer is while we're fighting; if we're going to include the women who continue to live with metastatic disease; if we are going to include the MEN living with and dying from it; if we're going to remember those we've lost, let's be honest about it. Let's not hide. It's ugly, painful, and scary. It's not pretty and it's certainly not pink.

*Images of pink porta-potties and pencils were taken by my dear friend, Jennifer, who passed away 3 years ago this month. She and I shared a general dislike of the pink products.



Want to read more? Some articles that speak to me:
My Disease Isn't a Cutesy Slogan

National No Bra Day and Breast Cancer Awareness Month — OR — Please Put That Pink Can of Soup Down & Put Your Bra Back On

Our Feel-Good War on Breast Cancer

 

Moving to the next step

Two cancer-related updates since my last post. First, my next surgery to complete the reconstruction is set for November 9. I can't wait. My discomfort has definitely lessened, but living with bowling balls in my chest is still not very pleasant. Half asleep the other night, I rolled over and said to myself, "What the hell is this hard thing in my bed? Oh, it's my breast."

Second, is starting lupron injections to shut down my ovaries. I'll get these once a month unless/until I decide to have my ovaries removed. After a month or so, I'll start taking an aromatase inhibitor. Together, these interventions will seek to eliminate all the estrogen in my body. Thus, if there are any renegade cancer cells in my body, they will not get the fuel they need. This will not eliminate the risk of a future recurrence, but it will reduce the risk.

I've amped up the exercise, starting some strength training and running. It's amazing how much fitness I've lost. It'll be important for me to get back into it for my mental health as well as to lesson the side effects of the hormone therapy (hot flashes, joint pain, weight gain, etc.).

Getting Back

This past week brought some much needed glimpses of my normal self. First was my return to exercise. Being an avid exerciser, it's been hard for me to miss my morning runs, workout classes, and yoga. I've been very compliant with the doctors' suggestions to take it easy, and I know my body has needed to recover, but I've definitely noticed a decline in my fitness. It's not just not being able to exercise, it's the impact the surgery--especially the reconstruction--has had on my upper body. Recall that the tissue expanders are placed under the muscle. As a result, the muscles in my chest and down my upper arm have all been impacted. It's just in the last couple of weeks that I'm able to lift my arms straight above my head, and even then, I can feel the stretch. Also, thanks to all the delicious meals and my lack of movement, I've gained about 8-10 pounds, seems to be mostly in my belly. Thank goodness for yoga pants. Sure would be nice to feel comfortable in my work pants.

Anyway, this week, I once again started getting up before the sun, and instead of running, been doing brisk walking. It's been a better workout than I expected. And I love that time before the day sets in to be outside, chat with my running/walking friends, watch the sun rise, and move my body. I'm very anxious to kick it up, but for now, I'm very happy to have this little piece of my normal life back.

The other glimpse of normalcy has been my return to work. I've actually been working from home--just about full-time--for the last couple of weeks. But this week, I started going into the office. Coincidentally, my boss has taken on a very large, high-profile assignment and asked me to help with the communications aspect. It's very interesting and exciting to be a part of it, but it's also quite intense as I get up to speed and hit the ground running. I've really enjoyed being with my team again, who are all so supportive and talented. So, going to the office has been good for me. It's also been good for my kids to see me doing all my "normal" things, but I think they're also happy that I'm not quite as busy and go-go-go as I usually am.

The only drawback is that I'm still in some discomfort. I think I'll feel much better when the tissue expanders are exchanged for silicone implants. The expanders make it feel like I have boulders under my skin, so there's no give against anything pressing against it. And the nerves in my skin are still damaged, so any fabric against my skin is very bothersome--cross between itching and burning sensation. So, by the end of the day, after being in discomfort all day, I'm pretty exhausted. OTC analgesics do not seem to help, but I am able to take stronger prescription painkillers before I go to bed. Sleep is a little hit-or-miss, but if I can get a good night's sleep, I wake up with good energy and am able to go about my day pretty normally.

So, all in all, things are going pretty well. I'm still waiting for the results of my Oncotype DX to determine the next steps of my treatment. As you can imagine, I'm anxious to get that plan mapped out and get started. Well, as soon as I hit, publish, I got an email from my oncologist. My Oncotype DX score is low, so NO CHEMO!! <happy girl wiggle dance> I'll start hormone therapy soon.

Under (re)construction

My big news today is that I finally got my post-surgical drains removed! Those things were awful and a constant reminder that I am a patient. If you've never had the pleasure, basically, during surgery, the surgeon inserts tubes near the surgical site. These tubes connect to a plastic bulb. The bulb is squeezed tight and creates a vacuum to suck all the nasty blood and other fluids out of your body. The patient then has to empty their drains several times a day, measure and record the output. When the output reduces sufficiently, the doctor can remove them. They don't particularly hurt, but there is some tenderness at the insertion point, and they tend to get in the way and make sleeping on your side a challenge. Drains come with the territory regardless of reconstruction. Some tips for those who ever have to live with them.

• First, I used my running belt to hold the drain bulbs. They fit snugly and securely and provided the most discreet option. 
• Second, I pinned them to a strand of beads around my neck to take a shower. This was not particularly comfortable, but it helped to keep them from hanging.

Okay, so about the reconstruction. There are many different reconstruction techniques, and I'm learning that it's not one-size-fits-all (get it? ;) ).  There are implants and there are autologous techniques (using your own tissue from elsewhere in the body).

So, if you're wondering about my reconstruction process, I chose to get implants. It's not quite as simple as it sounds, and it barely resembles a breast augmentation. There are two ways to get post-mastectomy implants: the first is direct-to-implant procedure and the second is to have temporary tissue expanders followed by implants. That's what I got. I actually hoped to go directly to implants, but when the plastic surgeon was able to see what he was working with, he was concerned that my skin was too thin to successfully accommodate them. See, during the mastectomy, the breast surgeon has to remove ALL the breast tissue, taking it down to skin and fat and muscle. I'm a pretty thin person, so there wasn't a lot of fat to help the cause. So, he made the game-day decision to use the expanders. They are basically inflatable implants, which are placed under the chest muscle (yes, that's as painful as it sounds) and gradually expanded to size. I go every couple of weeks and he injects more saline into the expander. Once they are a little bigger the final implant size, I'll live with them for a couple of months. Then I will have another surgery when he will exchange the expanders for implants.

I was lucky that I was able to have a skin and nipple-sparing mastectomy, meaning that they left the nipple and as much of the skin as possible in-tact. This will avoid the need for nipple reconstruction (though some opt for no nipples, 3D tattoo nipples, or some very beautiful tattoos). Of course, many women choose not to have reconstruction, which I'm starting to understand more and more.

So, along with the drain removal, I had an expansion today. The expansions put a lot more pressure on my muscles so I'll feel more sore for the next few days. My other complaint is not about reconstruction, but just the mastectomy. As you can imagine, nerves had to be severed, so now as the nerves are trying to regenerate, I have pretty intense hypersensitivity on my chest. It's hard to find any fabric that does not exacerbate it. I must change my clothes at least three times a day, as something that feels comfortable will become unbearable within a few hours. It's also been very hard to sleep between the discomfort and the drains. I'm really hoping that along with the drain removal, I'll get a better night sleep tonight.