DELAYED HEALING

Alas, I do not have much room in my brain to fully ponder the notion of not going to the Cancer Center for 180 days. Why? Because my beautiful new incision (read about that here) is not healing again. (Warning: There will be pictures involved.)

Trouble starts up again: The telltale yellow spots.

Three small yellow/green spots (not infection, but excess collagen which is interfering with my body's ability to close my skin) develop along my right incision line. I continue to keep it sterile and covered with antibiotic ointment and Xeroform and plenty of gauze (which I have to change every few hours, because the fluid my body is producing is leaking through the spots in my incision. Kind of like having a bad period, but continuously).

I keep Dr. C.’s office informed, and I monitor my progress (or lack thereof) by photographing my incision line each morning. I also rest more by taking a long nap every afternoon.

Can I just say how hard it is to try and lose weight when I have to eat more food rather than less? Dr. C. told me that healing "is not the time to restrict calories." And getting in 100 grams of protein a day — protein promotes healing — means eating every three hours. (See my Top 10 List.) I can’t lift anything using my right arm because the incision is still healing. No pulling, no pushing, no carrying with that arm. No upper body exercise aside from gentle stretching. Walking is fine, as is the elliptical (but no arms).

I still feel semi-exhausted most days. Though I realize I've been under anesthesia twice in the past month (4 ½ hours total), in my mind I feel like I should have more energy. The old me is having a hard time accepting the new me.

Three spots converging to become one.

And I continue to document my progress with my digital camera. I highly suggest this practice.

After several weeks, I notice my revised incision is not healing properly. The yellowish green spots have merged, colliding to become one larger spot. Dr. C. doesn't like the look of it. He wants to "debride" (i.e., clean up) the unhealed area and re-suture my incision line. Again.

I'm pleased he’s taking the precautionary road and we are dealing with this surgically (my other choice: continue to take a "wait and see" approach while continuing to use a special “debriding” ointment, but that doesn't seem to be helping), but I’m not happy about having a 3rd surgery.

Quarter-sized spot

The spot grows to become the size of a quarter (see photo at right). So five and a half weeks after my last incision revision (and 8 weeks after my bilateral mastectomy), I am wheeled for a 3rd time back into the operating room. The staff is familiar to me now. They recognize me. “Oh, I remember you!” (Nothing like being famous in the OR.)

Dr. C. debrides the area and re-sutures the skin. (And yes I'm loosing a little skin each time he does this.) He removes another 50 cc's of saline from the right tissue expander, reducing the pressure further in an attempt to get it to heal.

My right tissue expander is now less than half the size of the left. Yes I am very lopsided and that makes it difficult to disguise in clothes. (As if having coconut shells on my chest weren't enough, mine seep and are different sizes! Oh the joy!) I buy a heavily padded bra that I wear to give the illusion of a normal shape. (Just don’t hug me.) But most days I live in my surgical compression vest — which I still must wear 24/7.

Newly debrided, re-sutured incision

My new incision, however, looks beautiful (see image at right)! I am told to focus on getting back to life: keeping up my protein intake, walking, trying not to do too much around the house (I have to force myself to limit movement of my right arm so I don't put undue pressure on the new stitches). My energy is coming back despite having 5+ hours of anesthesia in two months. I’m back to hiking twice a week.

But as all things in the world of cancer, nothing ever goes as planned. Several weeks pass and again, the tell-tale spots. (What a sinking feeling that is.) The spots are small, and do not advance as quickly as in the past, which is good (and I make note of), but still, it's hard to ignore the fact that this incision does not want to heal. (My other side? Completely fine, still.)

With spots come seepage. It's almost like my incision is weeping along with me. The seepage seems to be tied directly to how active I am. If I work at the computer and then take a nap, it doesn’t leak; if I take a hike, make a salad or drive to the grocery store, it does leak. How much of a prison can I live in? I vacillate between doing nothing for days on end, and trying to be normal (save from using my right arm). And still I leak. Labs show no sign of infection, BTW.

I am a patient woman, more patient than most, but WTF? Seriously, I am so over this. There have to be other women out there who are struggling with these healing issues too. Sure enough, I head online and start a thread within the BC group for tissue expander problems (aka “delayed healing”). Once I connect with others in my situation, I feel far less alone, knowing these ladies "get" the frustration I am wallowing in. Some had infections that prevented their healing; some had allergic reactions; some experienced rejection of the expander (their body viewed it as a foreign object); some had an expander that sprung a leak (it happens!); others had thin skin due to radiation or surgery — the latter of which we believe is the cause for my troubles. My surgeon scrapped as much tissue out of my affected breast as possible during my mastectomy (I told him I didn’t want any tissue left for bad cells to move into so get it out, please — and he did). But now there doesn't seem to be enough circulation in the thin skin that surrounds my incision.

Dime-sized hole in my incision.

Despite the exercise, the protein, the non-use of my arm, the naps and my (generally) sunny disposition, my incision doesn't heal. The main spot widens to the size of a dime. (Better than a quarter! See photo at left.)

Office stitches

I know I can heal this if Dr. C. reinforces the center of the spot — so he gives me a four blue stitches (in his office this time, no anesthesia, and yes I was scared).

I have been wearing my surgical compression vest and changing my gauze dressing for 5 long months. I can do it a little longer.

Husband and I decide to take a short trip to Las Vegas to celebrate our anniversary and take my mind off my healing. It works; I am able to completely forget I have cancer (seriously!) and I feel like the old me. It was fabulous.

Except when it wasn't. We were walking a lot, so, natch, the seepage increased. (We went to a show one night, and I was seeping so much I had to stuff a washcloth in my big bra to safeguard against leakage.)

The "What happens in Vegas, stays in Vegas" addage apparently doesn't hold true for me. I make an appointment with Dr. C. to discuss said seepage. He removes my pretty plastic stitches and says the incision looks great, but is concerned that the incision is not sealed. He explains that because my skin is so thin, any buildup of fluid will exit at my weakest point.

We are bandaging the wound differently for the next few weeks to see if it heals any differently.

Then we start talking about Las Vegas. (Funny, I don't remember telling him I was going.) I say it was great to get away. He asks how we liked the Wynn. What? How does he know we stayed at the Wynn? I look at him, perplexed. He keeps going. “You were on the 60th floor, right?” Whoa. What? "How do you know that?" I ask. He laughs and says he saw my husband and me get on the elevator just as he and his wife were getting off. He called out to us but then the elevator doors closed.
He figured I didn’t recognize him in his pool shorts. (He would be correct; I usually see him in a suit.) I added that had I seen him, though, I would have told him I had a washcloth stuffed in my bra! We had a good laugh.

When I tell Husband the story, he laughs too, then has a vague recollection of a guy in a straw hat, waving at us from an elevator. Small world, isn't it?

DECISIONS, DECISIONS

Vegas did a number on me. (OK, it wasn't Vegas that did it — it was the possibility of needing a double mastectomy.) I am on edge, on the verge of crying, and short-fused. It's a bad mix. I need a solution. Fortunately, Dr. A. is true to his word; he calls Dr. C., the plastic surgeon, over the weekend and I am fast-tracked into an appointment  on Tuesday afternoon. My BFF accompanies me to take notes. 

I like the guy instantly. He asks me to begin with my list of questions because he says he can tell from what I ask how informed I am about breast reconstruction, and this allows him to tailor his answers specifically to me. I love the approach; it makes me feel more in control. He's also very easy on the eyes. (OK, so that's not why I chose him but it's not such a terrible side benefit, is it?) The night before my appointment, I comb through The 10 Best Questions for Surviving Breast Cancer (it’s more like 200 questions, actually) and create a long list. Dr. C. patiently listens and carefully answers every one of my questions. He spends nearly two hours with us. 

Though I have just met him, I decide that if it comes down to needing a bilateral, this is the man to make me look whole again. My BFF feels the same way. (Yup, she agrees he is adorable and the right guy for the job. It's good to have friends with your best interests at heart!)

The Possible Plan (should I need it): Immediate bilateral reconstruction using tissue expanders with a later surgery down the road to exchange the expanders out for silicone implants. (Silcone had issues back in the 1980s, but Dr. C. assures me they are very safe now and prefers them over saline because they are the most natural looking.)

I am thrilled to have my surgical team in place. Now I can focus on figuring out what kind of surgery I need so I can get this cancer out of me. I've been very patient up until today. Now I want it gone. 

The next day is my MRI. I am claustrophobic, so I have to mentally get past this. A technician has me lie face down, with my boobs hanging through holes in the imaging table. (Do the humiliations ever end with breast cancer?) The machine makes clanking noises while I stay perfectly still. I shut my eyes and imagine I am hiking on my favorite trail in the wide-open spaces. I keep my eyes closed the entire time. Fooled even myself; I nearly fell asleep.

I arrange to pick up copies of the MRI films two days later and then take them to my surgeon Dr. A., who gives me the bad news: it's clear from the MRI that due to the size of my mass (3 centimeters), a lumpectomy will, in fact, leave me disfigured. So one week after hearing that I might need one, I bite the bullet and give the go-ahead for Dr. A. to schedule a bilateral mastectomy. 

Dr. A. and Dr. C. will work side-by-side in the operating room; Dr. A. removing breast tissue and any necessary lymph nodes, Dr. C. starting reconstruction by placing tissue expanders under my pectoral muscle to keep my skin inflated while I heal (and eventually filling the expanders with saline over a period of months, then another surgery to swap them out for permanent silicone implants). And this is all going to happen in less than two weeks. 

VEGAS MELTDOWN

To put you in the mindset: I'm in Las Vegas with my two BFFs for a rhythmic gymnastics meet (the daughter of one of my BFFs competes). I am nervous about my upcoming lumpectomy, so this weekend is a welcome distraction. The first rhythmic event is tonight, and we're all really excited. After breakfast, we spend the day walking around The Strip and end our outing at Serendipity, where we wait 45 long minutes for their famous (and fabulous!) frozen hot chocolate. 

We return to our hotel to shower and change. And since I am the official "makeup artist" today, I also apply eyeshadow and lipstick and sparkles to my friend's daughter's pretty face. In the adjoining room, I hear my cell phone beeping. It's now 5:30 PM on a Friday night and my surgeon, Dr. A., has left a voicemail. This is very odd. I've got 10 minutes before we have to leave for the competition. I rush to call him back.

Good news/bad news. He has presented my case before the hospital's tumor board and has called to tell me the consensus is in: I need an MRI of both breasts before I can have surgery. And that's not all. Due to the location of the cancerous mass, my nipple must go. Which means more than half my breast must also go. Which means I likely will need a mastectomy — not the lumpectomy I am scheduled for in five days.

Dr. A. and I had previously discussed this very possibility at our last appointment, and I told him then that if I wind up requiring a mastectomy, I want a bilateral. Remove 'um both, remove as much future worry as possible. And give me some matching, reconstructed boobs. Now he agrees this is the best plan of attack, but the MRI will tell us precisely what we should do. So I need to get that scheduled. In the meantime, will cancel next week's surgery.

My head is swimming. My BFF knocks on the door to say we have to leave. I plead for five more minutes. (I realize this makes the kid potentially late, but I don't know what else to do.)

Dr. A. also adds that I need to see a plastic surgeon for a consultation. Can he recommend anyone? I ask. He gives me two names. But something doesn't feel right. I pause, then say, "If this was your wife, who would you send her to?"

"Does your health insurance let you go out of network?" Yes. "Then if it was my wife, I would send her to Dr. C. He's an artist. We've worked together before. I'll call and tell him about your case, but you give him a call on Monday." 

In the span of 15 minutes, I've gone from mentally preparing for a lumpectomy to probably needing a double mastectomy and a plastic surgeon. This is way too much to process.

Yet my little entourage awaits. So I swallow my fear, force back the tears and step into the hotel elevator. I smile at our little gymnast, but my BFFs can see there's trouble in my eyes. Somehow, we get through the next hour talking about routines and hula hoops on the way to the meet before leaving her with her coach and teammates. We have exactly one hour before the festivities begin. One hour to cry over my beer and dissect my need for a bilateral mastectomy in a nearby pub.

The next day is spent in a stifling hot, noisy gymnasium watching dozens and dozens of  girls perform complicated floor routines to very repetitive music. We are sitting in a crowd of parents and children — certainly not an environment where I can break down the way I need to. I probably should have stayed at the hotel and ditched the meet, but the thought doesn't occur to me until I'm already inside the crowded gym. Besides, it feels better to be surrounded by my friends than be alone with my thoughts. So I suppress my emotions and put on my  "everything's OK" game face. But everything is so not OK.

But eventually I crack. It happens before the final event. I have a hot flash and feel like I'm about to implode from the heat. I can't find enough air to breath, and can no longer hold "it" in. I leave the gym abruptly, wade through the throng of spectators and slip outside where the air feels cool. And I start walking. I pass a playground with seating, but there are kids playing, and I can't deal with their screams. It is I who wants to scream. 

I wander over to a senior center next door and sit down on a cold bench. I'm finally alone — and so numb and overwhelmed I can't even cry. I just sit there and stare into space. 

I needed this weekend away with my best pals before I head into surgery. And if I had waited until Monday to return the surgeon's call, I might well have had the carefree time I was envisioning. But once that fateful call was answered, all bets were off; I lost emotional control. And the road trip quickly morphed into an exceedingly stressful, solitary nightmare on wheels. I call my husband. I just want to come home.

PRE-OP ROAD TRIP

My datebook tells me I have a lot to do today before I head to Las Vegas tonight. I wish I could say I am taking a trip to take my mind off my upcoming surgery (while that is a side benefit, it's not the real reason I am going). Instead, I am accompanying two BFFs and one BFF daughter, the latter of which is competing in an athletic event in Vegas. And a road trip sounds soooo good right about now.

          First things first, though. I pick up my car, which has been in the shop due to a broken automatic-window-control thingy. Then I stop by the dentist to cement a crown and get my teeth cleaned. For some unknown reason, I decide to tell the hygenist I have breast cancer and of course I start to cry. (And no, I really didn't see that one coming!)

          Next up: my pre-op appointment with my internist, Dr. S., in preparation for my January 19th lumpectomy. But he is not in today. Instead, I see a doctor I've never seen before. She greets me in 3-inch heels and carries a folder with the pathology report from my biopsy in her hands. She glances down at it and says (quite casually), "So, you'll be having chemo then?"

          Me: "WHAT?"
          Daffy Doc continues: "I see you are estrogen negative."
          Me: "No, I'm not! I'm estrogen and progesterone positive — I'm HER2 negative!"
          DD: "Oh, I must have read that wrong." Pause. 
          DD (again): "I see your BRCA test is negative."
          Me: "WHAT? That can't be back yet. It's too soon. Are you sure?"
          DD: "Well, that's what Dr. S. typed it in here. Why would he type it in if it wasn't in?"

Now my blood pressure is on the rise. She asks me a few real questions (not inane assumptive statements) and then a nurse comes in to draw my blood and run an EKG. I'm handed a referral for a chest Xray (which I have to get at another location on the other side of town). On my way out, I ask the nurse at the front desk for a copy of my BRCA results. Guess what? They can't find them. The nurse that drew my blood pipes in: "I haven't seen any BRCA test results come in yet." Really? How surprising.

          I wish medical professionals would be a tad more sensitive; these tests, these stats, are a VERY big deal. And when my info is treated nonchalantly like this, it makes me feel whittled down to a bare nub of a patient — just a number on a chart that can easily be misread. Not on my watch. This is MY life we're talking about!

          I look at my cell phone and realize I have barely enough time to get the chest Xray and then get home to make dinner before my BFFs arrive. We have a quick bite, hop in the car and steer it towards the freeway. We laugh, we joke, we sing, we break a tail light.  BFFs are great!

          We roll into Vegas exhausted, and plop down onto our big, comfy pillow-top beds. Oh yeah, this is exactly what I need.