ALMOST THREE MONTHS

There is an odd sense of urgency you feel when you have a cancer diagnosis no matter how early it was caught, how lucky you are and how often the words “they got it all,” are said. So ALMOST THREE MONTHS in as good as I feel, I am humbled daily by my privilege to live and I don’t take it lightly. People say there are “gifts” in all of this trauma. This is usually true with any downswing in our lives, what we do with what we experience is part of the unique process called survival. I tend to live knowing this and I think I have actually been living this way since my brother died over twenty years ago. But it is the sense of urgency that is my newest friend and this has created a mixed bag of feelings for me.

I am trying not to minimize how early my breast cancer was caught, I tend to do things like this. Not take it seriously, like it wasn’t life threatening because it was caught so early, and I find myself thinking, to quote one of the many quotes from Ann, “Don’t be so dramatic, Alayne.” But the fact that I am coming to grips with is that I have had breast cancer twice in two years to the day and I have a genetic mutation that makes me a much higher risk to get something again.

I am not being dramatic, I am being pragmatic and this is where the sense of urgency stems from. The balancing act, the need to watch my lifestyle more closely so as not to aggravate and stimulate. I have a friend who was just diagnosed with a really advanced stage cancer. Her sense of urgency is no comparison to mine but its humble lesson is a reminder to me to not wait to do the shit I want to do whatever that is. Right now, it is to write. I just want to write about everything. I want to garden and to write. I want to go to the beach, to garden and to write. I want to say yes to the people I love and no to the people I don’t. I want to get rid of all of the stuff in my house that I no longer need, that is weighing me down so it makes it easier to enjoy my space. I want to watch nature and put down my phone and smoke pot and create art in my barn on a rainy day. I want to go for bike rides and gather my friends for more picnics in the park. I want to go to my favorite gym in Newport often and workout with all of the rocking cool fit chicks that I get to call my workout friends. I want to cut more flowers and make bouquets for random people so that they smile unexpectedly. I want to give compliments unabashedly to many friends and strangers because it just feels pure goodness when I do. I want to dance with my partner more often and go out to dinner with my son when he is home. As I write all of this today on ALMOST THREE MONTHS, I realize that I do all of this now. I feel lucky to have received the “live in the present” memo early and the irony of this whole shabang is I feel lucky and grateful beyond measure. This feels weird to write because why would someone with two time in two years cancer diagnosis feel lucky? One (very superficial) reason is for this seriously awesome new set of breasts I have been fortunate to land. I remember feeling so sad about having to have my breasts removed and the notion of having a fake body part was freaking me out. It all feels so trite now, but if I go back to my early writings, I had a super heavy heart. Heavy heart no more, my new dress up boobs are a blast as they stand at full attention –standing, sitting, lying down, running, jumping-zero movement. When I hug someone, I find myself using the excuse to have the discussion because seriously when you hug me there is no mistaking their incredible fakeness. They are two solid baseballs, not softballs attached to the front of my body. And I love them.

I love wearing low cut dresses around my house where it is so obvious that not only do I have fake boobs, but that I have weird indentations and areas that are clearly uneven from a double mastectomy. I love giving people permission to look, to feel, to ask. I love to get the conversation going because I can. The fact is that someone you know will be going through this same exact experience and maybe they will be less scared because I created the environment to ask me about the contents of my upper body making it more accessible for the conversation. So here is a brief explanation of where I am at and what I have to look forward to over the next coming months. I hope it will serve as a forward to someone you know who may be contemplating their own sadness at the prospect of a mastectomy. Every single experience is different, but for me it has so far been without challenge or problem (knock on wood).

My new rack is temporary. When you get a mastectomy, it is not that your breasts are getting taken off, but rather scooped out. The skin on the outside remains and that is new container for the temporary inserts called tissue expanders. These very thick silicone discs have built in pinsize magnetic ports that allow for the plastic surgeon to find and inject saline fluid to literally slowly expand them over the next five months. The reason for this is especially because I had radiation the first time around so the tissue had to come from the lattimus dorsi muscles in my back, hence the angel wing scars. The tissue has to slowly repair itself and has to expand slow and steady to be able to fit the new silicone that will be exchanged for these sometime in October or November (five months or more from original surgery date).

It all sound awful, but like anything in life, it is what you get used to and the glory of the tissue expanders is that I get to play dress up as I decide on the how much is too much size. For my body type, the expanders can only each hold 550 cc of saline and right now I am up to 500. BAM. The more liquid that gets added, the tighter the skin gets because it is like a balloon maxed out, when you put a little air in it, it has some wiggle room, when you fill it to the max, it is stretched to the max and therefore no wiggle room.

I am asked if I have trouble sleeping. Once you go through any breast surgery with drains especially, you quickly learn that lying on your stomach or your sides isn’t going to be the go to sleep position anymore. You adapt quick because you have to sleep. (thank you medical marijuana again) When you get to the point I am at, I can much more easily sleep on my side, but not on my front because it seriously feels like a tetter totter piece of playground equipment. The other question I get is, “What do they feel like?” They don’t. There is no feeling. Here is another question, “What about sexual feeling?” None. But I did nipple sparing so I still have my own nipples, but though they are responsive to touch and temperature, they feel it, but I don’t. This being said, I really enjoy the no sensation sensation. Like childbirth, this is impossible to explain unless you have experienced the experience so you’ll have to trust me on this one.

So here I am at ALMOST THREE MONTHS and have had all but one of my last fills (fills are what I go for every 7–10 days to have the fluid added to my tissue expanders so they expand slowly) They are almost maxxed out, hard as a rock, and now I wait patiently for my hopefully final surgery that will be the exchange. At this surgery (because I have the best breast plastic surgeon in the state for sure aka Dr. Hottie) he will not only exchange the silicone for more pliable real feeling silicone implants, but will do some sculpting with some of my own prepared fat from some liposuction (Goodness, I love America), to fill in the holes and indentations from the scooping out of the cancerous tissue. Unfortunately I don’t get to instruct him where he takes that fat from (inner thigh was my choice, but he already rejected that suggestion for some reason)

As I reread this, it sounds bizarre and probably frightening as it did to me the first time I gathered this information from another surgeon two years back which is why I elected to have a lumpectomy the first round. But actually, it has been a completely positive experience. It is not like I had to lose a body part that could not be replaced. I didn’t have to get used to walking on a prosthetic or seeing from one eye. This experience has humbled an already humbled ass. My cup runneth over and I get to share my very positive experience with other women who may be approaching this decision with the same fear I had. I also realize that I am 52 and not childbearing age or younger. I am not just starting my young life experience out. I have had a child, I have had great sexual experiences with my breasts. My life has been full so I cannot speak to the sadness and grief that a much younger woman must have to go through, but I hope that this is a helpful description to some. If anyone ever wants to ask me a question, never hesitate. I am happy to help someone move through the scariness and into the fun of Dolly dressup, go big or go home- that’s my new badass motto.

I leave this writing today with one of my favorite poems by ee. cummings

“i thank You God for most this amazing

day: for the leaping greenly spirits of trees

and a blue true dream of sky; and for everything

which is natural which is infinite which is yes

(i who have died am alive again today,

and this is the sun’s birthday; this is the birth

day of life and of love and wings: and of the gay

great happening illimitably earth)

how should tasting touching hearing seeing

breathing any — lifted from the no

of all nothing — human merely being

doubt unimaginable You?

(now the ears of my ears awake and

now the eyes of my eyes are opened)”

AMEN

After a day of creating art in the barn. Not bad considering they are totally fake and this was at TEN WEEKS.