Staying A Breast with DCIS - Bellevue, WA
You get the call from the pathologist and you hear...
I was diagnosed with DCIS or ductal carcinoma in situ. Even though the pathologist tried to smooth the news with "If you're to have cancer, this is the best one to get" didn't seem to soften the impact. Learning that 1 of 6 diagnoses of cancer are breast cancer did little to calm me. Apparently, I had just joined a new group or club I never knew existed.
After consulting with a surgeon and plastic surgeon, I opted for the complete mastectomy. If only my right breast were removed then I would need reconstruction on one, but to match my left, which wasn't any lightweight in the tata hierarchy, I would need a reduction and some reconstruction so they would match. Even with that, the chances of matching were not 100%. Plus the fact that I was warned that my chances of a cancer diagnosis in the left was 5 times greater and I would require an annual MRI and mammogram was just too much maintenance for me. So I decided to have the left removed as well.
When you tell people you have cancer, they grapple for something to say. I could feel the icy awkwardness and decided that a joke, even about something serious, would ease the silence.
"Yep, decided to just get them both removed since trying to reshape the left would be tough," I joked. "I'd have one perky boob pointing towards the horizon and one pointing south. Really, I'd just look confused so it's better if they point in the same direction." My friends would laugh and the situation would ease.
I joked about having bobs like Barbie, perky with no nipples, and entering wet t-shirt contests. "And look how much money I will save on lingerie!"
"Yep, going to find about about a tummy tuck, as I have enough landscaping to turn my stomach into a pair of C-cups. Maybe pull my belly button in line with my new breasts and convert it to a credit card holder or coin purse," I'd laugh. "I'm definitely turning lemons to lemonade."
The fact was, I was scared to death, but I didn't want anyone to know. Having something inside you like cancer, and not being able to fix it, cut it out and make it go away is frustrating and frightening, especially for a career woman who has never let an obstacle stop her. Suddenly you're helpless and making others feel better while your mind continues to swirl with thoughts of surgery, reconstruction, scars, pain...and it's safer to keep it to yourself as sharing just makes others feel more awkward and distant. The last thing I wanted was pity.
Two weeks later I had a mastectomy. I arrived at the hospital at 5:30am Thursday and was released the next day at 11:30am. I was bound and determine to go home even though I felt like I had been hit by a truck. Now I understand what road kill must feel like moments before going to the light. Exhaling hurt. Inhaling hurt more. I couldn't raise my arms to put on my t-shirt. I felt like the Robot on Lost in Space series, only able to rotate my arms from the elbows. Bending over was excruciating, but getting up from the bed was worse as you can't use your arms as leverage -- no pushing or pulling. "Danger Will Robinson, this totally sucks."
When I got home I raised my shirt and took a look at my chest. Yes, the "girls" were gone and all they left was scars, tucks and bumps and some bruising. I also saw my stomach really for the first time. Now I know why God gives women breasts: it's a visual barrier to our stomach. Yikes. I decided that was enough of an adventure for one day.
The four drains, two on each side, hurt and I have to drain them 3 times each day. Not only drain them, but measure the fluid as well. This is not for the squeamish, but you do what you have to do. You cannot take a shower or get yourself wet from the waist north. I wash my hair in the kitchen sink and then take a half "bath" each day.
I have had to sleep on my back like a mummy. If mummy's do rise, I can tell you it's not for revenge, but from back pain from lying flat for longer than an hour. It's tough to get comfortable, but a pillow in the small of your back does help. Getting any real rest is iffy. I stopped taking the Percoset less than a week after the surgery.
After two weeks, I can get out of bed with no pain. My chest feels tight and looks like a patchwork quilt sewn together by crack heads. I have two extenders, which are about a B-cup. The extenders feel strange inside you. You know they are foreign and when you lie down, they don't slosh to the side like your real tatas. They stay put, pointing upward. Always saluting the world.
I'm getting around great. Got two of the drains out this week so I am thrilled. That's two weeks ahead of schedule! It hurts less when I try to get comfortable to sleep. And it's easier getting dressed since I'm not hiding two sets of drains beneath my clothes. I'm bringing Grunge back into vogue.
I know everything will be fine. I have a long road ahead, but it's a better road than what I could've traveled. And, I am paving my road, cancer isn't. I'm cancer-free and looking forward to the next Relay for Life and to do that brisk walk up the survivors lane. I may get a new pair of tennis shoes just for the walk!
If it wasn't for me remembering to finally get a mammogram (which I rarely did) and a great breast imaging clinic, the road could have been much different. I now tell every woman I meet to get a mammogram. Period. I bring my own soapbox.
And if by chance, you ever have to deal with a diagnosis that turns your world upside down, you can cry, get depressed and be the ultimate "Debbie Downer." Black clouds can fill your world. Or you can turn lemons to lemonade, take your fear and convert it to humor, and meet your diagnosis head-on, knowing you don't have to jump every obstacle, but simply walk around them.
There is nothing you cannot do if you believe. Take no prisoners. There's a silent army behind you.
One Step Forward, Two Steps Back
Two of the four drains were removed and I was ecstatic. Progress was being made. Unfortunately one week later, fluid had collected in my lower right "former breast" and it was determined that it had to be removed. Not only that, but removing some of the tape revealed an area where the tissue was not healing properly. My surgeon decided it should be removed and then we could remove the fluid as well.
I arrived the next day and she performed the procedure, removing the "rotted" skin and sucking out the fluid. She was surprised I had accumulated 20cc's of fluid, but was hopeful that it wouldn't collect again. She stitched me back up. I felt nothing. Although I could see her sew me back together, I felt nothing but a tug and pull. It was like I was watching someone else being sewn back together.
I arrived at my next appointment, feeling pretty good that my healing seemed to be going pretty well. I undressed, put on my gown and waited for the examination. My surgeon poked, pushed and thumped my lumpy former right breast. I could see she wasn't pleased.
"You're collecting fluid again. I can push here and it bulges there. We have to put the drain back in." She handed me a mirror and pushed a lumpy area. It bulged to the upper right. Nice. My chest is like a waterbed.
I was crushed. Defeated. No, it really couldn't be. This was such a set back. I wanted to cry, but didn't dare.
"This will set you back a couple of weeks," she said. "I'm sorry. But we have learned that you make a lot of fluid and we need to be patient."
"What about the left? It's still going ok, right?" I asked.
"Yes. It's healing really well."
Ok, one bright spot. At least I could maintain my bragging rights on the left drain removal. That was a step forward even though the situation on the right was devastating...two steps back and a bit of a pause, a long pause.
I drove home, forcing back tears. I don't cry. I crack jokes. That's how I relieve stress, but this time, I was out of jokes. I found no humor in this situation. I was scheduled to have the drain replaced the next day.
The procedure took about 30 to 40 minutes. I barely felt a thing as my chest is numb. I now have to large bulbs poking out of my right side collecting fluid. The area around the new drain is numb from the procedure, but I know later today it's going to be painful.
It's hard to crack jokes right now. Give me a day and I'll be back. I know there has to be a bright side to this. I just need to dig a little deeper to find it. A lot deeper.
Feeling sorry for myself....
Alone in the bathroom, I struggled to get the drains to work again. Opening and closing the bulbs as if the other 50 times I had done it were just trials for the next time it would finally work. Each time I opened and closed the bulb, it would again refill with air. This meant that the drain inside me wasn't sealed and no fluid would collect in the bulb. I started to cry. All I could think was going back into the hospital and having them reinserted.
One drain finally started to work and some fluid collected in the collapsed bulb. But it was the second, the newly reinstalled drain that continued to worry me.
Off and on during the weekend it would work, then stop, then work. I never felt so low. The area around the drains was growing more red and irritated, and every time I added another stick of medical tape, my skin seemed to scream.
I tried pushing the drains more inside me, but the stitches to my skin only went so far. And it continued to hurt like crazy.
By the time my noon appointment arrived on Monday, I was close to tears. I couldn't move freely as the drains caused me pain. The nurse/receptionist could see I was not my typical chipper self. I walked as it I wore a full diaper.
Fortunately, my doctor retaped the drains in place and they did work for awhile. They didn't hurt quite so badly after she readjusted them. As she spoke, I sobbed into a wadded up Kleenex.
I did get the last of the drains removed from my left side. Woo hoo. I think my doctor felt sorry for me and took it out so I had at least one thing to be happy about. The other two drains would stay and most likely be out at my next appointment.
Ok, not so bad. I sniffed, patted my eyes with the clumpy Kleenex and smiled. So just one more week? I don't have to get these reinserted?
She nodded "no."
Awesomeness. Lemons to lemonade. I have seven more days of drains and then good-bye. All of that worry and misery was for nothing....well, maybe not completely a waste. I did get a good cry -- a cry I probably needed to do a month or so ago when I got my diagnosis and didn't.
Well, maybe better late than never. It felt good.
Drain, drain, go away
Yes. It just fell out. Apparently, the drain had surrendered, trying to escape by freeing itself from my armpit. The drain was giving up after my nearly obsessive threading and emptying, worrying that it would clog and I'd end up looking like a puffer fish -- poke me and I'd burst.
The drain wasn't working that morning and now it was out, lying on my car seat like some sort of awful reminder. I quickly snatched it and set it on the car floor. My dog look puzzled, obviously sniffing something odd, but after a pat on the head her attention was back again to our ride. "Squirrel!"
I started the engine and realized I was smiling. It felt good. The drain was out. I checked to see if I was damp from any residual fluid. Nope. All good. It no longer pinched. The other drain seemed to be in place, undisturbed. I sighed, feeling almost gleeful that only one remained. I really was having a happy moment! We ran our errand and to celebrate, my trusty best friend and I hit the Burger King drive-thru for lunch. I felt so good. Yes, of course, super size it. I'm celebrating!
When I returned home, I rechecked the last drain, the one that was replaced a week earlier. It still was not working. Both drains had stopped working and no matter how much I had struggled earlier that morning, nothing seemed to help. No fluid was collecting and the bulb would just fill with air. No matter how often I threaded the tube and opened and closed the bulb, it would not suction. I could feel the drain inside me, pinching if I moved and the area around the wound was red and itchy. It felt like a thorn in my side, a dull ache that just wouldn't go away.
I'd had enough.
Since Monday night, the drains had effectively stopped working. One had even fallen out and was held captive in my car. It was time. I grabbed my makeup mirror and scissors. I removed my shirt and carefully snipped the stitches from the drain that had fallen out. Snipping the sutures wasn't easy, but I finally removed that last of the black line.
Next, the last drain. I gently snipped the black stitches that bound me to that nasty plastic bulb. Using tweezers, I removed the last of the stitches. They felt like fishing line, sharp and stiff. Next was the tube...
I began slowly pulling the tubing. I could hear myself making grunting noises, but I couldn't stop. It hurt a little, but felt so good as the tube slowly revealed itself. I sounded like Tim Allen doing his "man" grunt, but this was the female version. "Ooh, ahh, ooh!"
Oh, I cannot tell you how good it felt to pull the tube out. I was finally free. I even did a little dance, waving the bulb in the air. A topless middle aged chubby woman dancing with a tube and drain in her bathroom. Oh, it felt to good to be free. I had pulled at least 6 inches of tube from within my side.
Ok, maybe I shouldn't have done it. I accept that and I will face any consequences that may result. But inspecting the tube showed it was clogged and no fluid would pass through the tube to the bulb. It wasn't working. Even if I had left it inside me, it would not function. The clog was significant, about 4 inches long at the beginning of the tube deep inside me. No amount of threading, tugging and pumping of the bulb would move that clog along. It was effectively glued shut. The only thing I would miss by leaving it in is a few night's sleep and the joy I felt by having it out.
Last night I had the best night's sleep since the surgery. Even though I still can't roll on my side as both are still very tender from the wounds, I relish the thought that it is possible. Funny, how something so small can mean so much! Sleeping on my side is a huge goal right now and I'm giddy thinking about it. I know. I sound crazy. But it is a step towards normalcy. I know I need to walk, but I really want to run. I'm trying to pace myself, but it's tough. I want to be whole again. I want my life back.
I know my doctor may not be too happy with me, but I can't stuff the drains back in. It seems to be fine today and my skin is less red. I think it will all be good when I see her next week. I'll stay on the antibiotics just in case. I may keep the last drain with the clog as evidence so she understands that it was futile to leave it in. I had no choice. At least I am comfortable, mostly pain free and I have something new to look forward to -- a decent night's sleep.
I may go take a nap just to try it out! :)
Seriously, it was Nirvana. The warm water beating against my scalp and pouring down across every part of my disfigured body. It felt so good. Who would've thought something we take for granted would be so incredibly important! I stood in the warm shower, steam tinting the glass doors like fog. Oh my God was this awesome.
I stayed in longer than usual and cleaned parts of me I knew were in dire need or at least I felt like they were. It felt so good to be fresh. I dried off with a towel and stood in front of the mirror.
Not a pretty sight. Odd looking bulges of skin with folds like pinched crust appeared where my breasts use to be. The bulges protruded under my arms, where a dimple appeared on both sides. I put my finger in it. This is where back fat meets breast, I assumed. I could see the half moon scar where my lymph nodes were removed. It was still pink.
Looked like a war zone.
I touched my new breasts, which were really extenders and it was a strange softness. It felt much like one of those heavy duty air mattresses, mooshy, but with some substance. I poked gently and released. It refilled. Yes, just like an air mattress.
I scanned my stomach. Not a pretty site. Hills, valleys...the only thing I didn't have was the amber waves of grain. Looked more like the Midwest from Google Earth.
Yes, it is true. God made boobs as a visual barrier to our stomach. With that removed, I was forced to see what a serous lack of self control of sweets had done to my waistline. Well, the waistline I used to have. I looked more like a lumpy telephone pole. Combine that with the poorly stitched breast area, I was ready for my photo shoot for Sports Illustrated....June, July and August. Not!
I dried off and decided that there was another thing God gave us aging divas...she gave us the gift of poor eyesight. As I have graduated from readers to full time eyewear, I realized that without my glasses, my stomach and breasts didn't look half bad. Yes, that means they looked half good, blurry, but half good. Mind you, I said half and that was with glasses off, squinting a little.
Thank you God for poor eyesight as we age. Surely God must be a woman as a man wouldn't have thought of that gift.
I smiled and got dressed. I was clean, half blind and half deluded.
Yes, I was getting back to being me again.
Reconstruction Under Construction
I still have the two tufts, one on each side where the surgeon stopped removing tissue. Looks like I am missing a button as if I were pillow or couch cushion with the button missing from the tuft. The plastic surgeon said she would liposuction the extra out so I won't look so deformed with bulges here and there and then there's the two round mounds that are my breasts. Honestly, they are ugly with scars criss-crossing, but I tell myself they will heal better the next time and won't be so noticeable. Right...
So my new boobs will be installed on December 20. Last year I had a colonoscopy on Christmas Eve and this year it will be a new set of ta-tas. Makes me nervous about next Christmas.
I still try to make jokes to make others laugh. When my long time friend called me to tell me her mother had the same diagnosis, I made her laugh about my situation. It made her feel better. Her mom is luckier than I as she can have a lumpectomy and doesn't need to go through this radical of a procedure. Her road will be hard, but if I can it less frightening so be it.
Making her laugh made me feel good. Perhaps that's my real end game in all of this--to let others know it's ok. You'll be all right. Keep smiling and nothing can tear you down. Make lemonade. Hell, plant a lemon grove.
I'm looking forward to the pain going away, being able to get out of bed and not feel the ice pick in my side from what I suspect is nerve damage. Raising my left arm with any pressure creates stabbing pain that truly debilitates me. I want it gone.
Until then, there are a pair of round saline boobs with my name on them. I'm looking forward to meeting my new set of twins in December.