Eleven-month update after bilateral mastectomy and TRAM Flap reconstruction

It's been nearly 11 months since I had my prophylactic bilateral mastectomy and TRAM Flap reconstruction and I'm happy to say, I'm doing pretty well. Gosh, that actually sounded uncharacteristically optimistic. But really, health-wise, I’m okay (kanuhora…that’s my grandma’s way of saying “knock on wood,” but I’ll leave out the three little spits that are supposed to chase away the evil eye). Otherwise, everything else is relative.

Why relative? I’m not as bad off as the people who experienced the earthquake in Haiti, but I also know my family needs to make some financial changes soon.

Between the surgeries and planning my son’s bar mitzvah which is now over, I’ve took off too much time and our finances are paying the price. We live in California which is a very expensive place to reside and it's easy to fall behind in bills as living expenses continue to sky rocket.

Still, I’m very excited to report I was hired recently to write a blog for the Press Democrat. The PD is the daily newspaper in our county and a New York Times newspaper. It’s a dream working for the paper; if only the income was as rich as the experience. I wouldn’t mind so much if not for…

These days, since my husband’s company filed for bankruptcy last year and has cut his hours during this year of restructuring the television station, I need to make more money to help pull us out of our debt resulting from his significantly smaller paycheck which can’t cover all the medical debt we have. His paycheck would be considered large in most any other place except pricey California and even with my new income, we find we are falling behind every month. I really don’t want to fall into that sad category of people who have lost their home and I certainly don’t want to have to move in with my parents! So, if you know of a publisher who’d be interested in my story, please have them contact me (I've already written one book that needs a publisher, after a professional editor looks at it, of course -- that takes money I don't have).

Enough frustrating financial crap. Now, for more recovery details.

Attack of the phantom nipples, stabbing pains and make-me-crazy itching

In the fifth through seventh months after my TRAM reconstruction, a strange thing happened: a phantom effect. Actually, an itchy, phantom effect. First, the phantom body part. Actually, I wonder if other women who have had mastectomies have felt the following as well.

The majority of my new breasts may be numb and I may no longer have nipples, but it still feels like I have them sometimes when they should be reacting to various conditions: cold, arousal, etc. Even if I run my hand across the scarred mound, I still get the sensation the nipple is reacting. Moreover, even though my breasts were gutted during the surgery, I still get some of the “let down” sensation for nursing just as I did when I had natural breasts (even years after I stopped nursing my children).

As for the itchy feeling...Even though my stomach and breasts are numb to the touch, there were a few months when everything was itchy. Unfortunately, scratching the numb surface didn’t relieve anything and it was enough to make anyone crazy frustrated while trying to satisfy that deep itch that wouldn’t go away.

Those deep itches have mostly gone away by now, but return periodically with a vengeance along with sudden sharp stinging feelings that the plastic surgeon said could mean the nerve endings are trying to heal, reconnect, whatever they do.

Caring for fading scars and stretching stomach muscles

The scars are still red/pink, but not as dark red and knobby as they were several months ago. The scars mostly flattened out after massaging Neutrogena Hand Cream (more like a serious ointment than a cream) into all my scars every day after my shower for a couple of months.

I can also sit up straight again without trouble and have done so for a few months. Even so, I still feel tightness in the muscles running from my stomach up to my new breasts. If I try stretching my arms up too high, it may feel like a spring that has been stretched a tad too far; pain strikes sharply in the muscles and I must quickly hunch over to avoid anything more than a few moments of lingering pain.

Lifting is still an issue: Once in a while, I’ll try picking something up that might be a tad too heavy and the newly-placed muscles will snap. I mean, it feels like someone reaches inside my stomach, grabs hold of the repositioned muscles and wrenches them, causing me to bend over in pain.

Another thing to watch out for…if you do lift something, face forward at the object; don’t try to twist your body around to your side to pick something up. I found out the hard way doing that hurts a lot.

Standing still. Moving too much or not enough

Standing still for longer than a few minutes continues to be difficult and tiring. If I’m moving, I’m okay, but standing in one spot for too long can be exhausting and I feel it in my abdomen and up through my torso. Conversely, if I’m moving too much through exercise or hiking up hills and other previously regular activity, my stomach muscles begin hurting and tugging, causing me to hunch forward.

And if you sit too long in one position, when go to stand up, this is an interesting feeling as well. I like sitting with my feet up when I watch some television in the evening. I have to be careful not to sit on my side, otherwise, when I get up, I'll feel the stomach muscle pulling painfully when I get up. Or if I'm sitting at my computer in the kitchen, when I get up from my chair, I look like those museum cave men who take a while to rise to an upright position.

The point is, I have to allow my muscles an adjustment period when changing positions otherwise, you guessed it...pain!

Learning to roll with it

Sleeping is still an odd experience in regard to my stomach scars. I have to be careful about how I flip over from side to side. It takes more care than it did prior to the surgery which means I tend to wake up more at night. If I turn the wrong way, I feel my scars tugging and sometimes it feels as though they will rip open, especially on the ends at my hips. I must roll over as one unit instead of rolling, for instance, my legs first with my torso following; the latter involves too much stretching of the stomach muscles and hurts.

As my skin has relaxed, those scar ends – one more than the other -- have turned into something strange. If you’ve ever done any sewing, the end looks sort of like a corner seam that doesn’t quite lay flat. It’s nothing noticeable when wearing clothes, but it has turned into a bit of a chunk of skin flowing out from the side.

If you get sick

Coughing and sneezing are still painful. The swine flu swept through our home last fall and coughing became a distressing procedure. With every cough, it feels as though someone is punching you in the chest and stomach. Getting sick with a cough is definitely something to avoid. If someone you are talking to is sick, don’t feel obligated to remain a polite distance from them; back up and avoid contact. If you get sick, you will be in great pain. And it doesn’t end when your cough subsides. When you’re not suffering through coughing sessions, your sore muscles will ache; holding your chest will seem like the only thing that can help, but it does no good (read my TRAM Flap joke below).

If you do get sick, one good part about having a numb stomach is it allows you to bring down a fever without experiencing the usual pain. Let me explain. If your mom is anything like mine, when we had high fevers when we were kids, my mom would bring down our fevers by patting our hot-skin body with a wash cloth dampened with water and rubbing alcohol; after wetting our skin, she would blow air on the dampened area to cool the skin. We hated this procedure because it would be painful when we had a fever of 102 degrees Fahrenheit or higher, but she would continue until our fever broke: she was always successful at her task.

The good part about having a fever with a numb stomach is that I could bring down my fever by placing my hands (chilled from cold water) on my numb belly. I wouldn’t feel the pain of the temperature difference against my hot skin, yet my fever would drop.

Breast shape and tightness: Several months ago, I mentioned how the tightness of the skin creating the new breasts feels like I am never able to remove a bra. Mostly, it still feels that way, but it seems to have relaxed a bit. Either it has relaxed as the swelling went away, or I’m just more used to it.

Regardless, it was after seeing photos of myself at my son’s recent bar mitzvah when I noticed how my breasts look in a gown. Actually, it wasn’t so much where my breasts are located; rather, the area just above. There’s this strange indentation that wasn’t there before the surgery when more of my chest was filled out by breast material.

Prior to my son’s big event, I had taken little notice of this indentation when I would wear strappy tank tops. Sleeveless tops are required menopause wear during bouts of hot flashes – my southern husband tells me, a southern woman would call a hot flash, “my own personal summer.” Perhaps that’s why First Lady Michelle Obama tends to wear sleeveless dresses and tops – she’s probably going through early menopause and wearing sleeveless tops help her cool down quickly after a hot flash sweeps through her body.

I’ve become a little self-conscious of this shapely change, but I’m still going to wear those sleeveless tops as long as menopause strikes back with hot flashes. It’s been a year and a half since they cut out my ovaries. Currently, either I’m getting used to the hot flashes, or they are becoming less frequent. They still strike the hardest at night. My husband thinks I’m nuts when it’s chilly winter outside and I keep the windows open and the ceiling fan on high. All night long, I’m either burning up or frosty cold. It’s amazing women going through this get any sleep at all. Oh, and does anyone else experience this: sometimes, when a doozy of hot flash is about to strike, I’ll suddenly feel sick to my stomach and that sick feeling washes over my body followed by a wave of heat.

Weight gain and scars: Another thing I’ve noticed since my stomach was stitched up from side to side is that when I gain even a pound or two, I can tell right away. The skin around the long scar becomes stretched tight like you’ve just eaten a massive Thanksgiving meal. And if you let your weight climb a little more, your stomach area begins bulging out on either side of the scar. It’s not pretty and motivates me to get on my treadmill.

Fanny pack bulge: Another strange thing I've noticed happens when I lean over at the waist. Although my belly fat has mostly been removed, when I lean over, I've noticed the muscles start bunching up inside. It feels as though I'm wearing a fanny pack in front and I'm trying to bend over the trapped pack. I feel the muscles repositioning and trying to find a comfortable spot. Very strange feeling.

Emotionally: Once in a while, I still question my choice to have this procedure, but that quickly changes when I think about my children. The kids are used to my strange body and my daughter calls the design of scars a smiley face. I wonder if my son will grow up thinking a woman’s natural body is strange after seeing my thrashed skin. I still worry if my children carry this horrible genetic mutation and I don’t look forward to waiting another decade before my daughter can be tested.

Finally, some TRAM Flap humor

My family knows I'm terrible at retelling jokes, but here's a little TRAM Flap humor I heard from a friend: When I winced and placed my arm across my breasts, my kids asked me what was wrong. "It's okay," I told them. "I just have a stomach ache."

Thank you!

Thanks to everyone for contacting me with comments, questions and stories about your own TRAM Flap and mastectomy experiences. Please continue to let me know how I can help you through this process and if there's any information you'd like more information about.